Recent Activities Recent Activities

22/06/2017
  Candidate Propose
rd proposed the Registry RD registry for Italy.
rd proposed the Registry RD registry for Italy.
RD registry ()
Registry
Contact: rd
Address:
URL:
17/06/2017
  Candidate Propose
GlennaFroto proposed the Registry GlennaFroto for Sweden.
GlennaFroto proposed the Registry GlennaFroto for Sweden.
GlennaFroto ()
Registry
Contact: huikolioiuouok@aolmail.pw
Address: Boden
URL:
17/05/2017
New Registry Published: PRO RETINA registry
Registry PRO RETINA registry from Germany was published an is now listed in the catalouge.
PRO RETINA registry
Registry
--Maincontact--

17/05/2017
  Candidate Propose
Yllka Kodra proposed the Registry PRO RETINA registry for Germany.
Yllka Kodra proposed the Registry PRO RETINA registry for Germany.
PRO RETINA registry (PRO RETINA)
Registry
Contact: Markus Georg
Address:
URL: http://www.pro-retina.de/forschungsfoerderung/patientenregister
05/05/2017
New Registry Published: REVEAL: Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management
Registry REVEAL: Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management from United States was published an is now listed in the catalouge.
REVEAL: Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management
Registry
--Maincontact--

05/05/2017
  Candidate Propose
Paola Torreri proposed the Biobank REVEAL: Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management for all.
Paola Torreri proposed the Biobank REVEAL: Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management for all.
REVEAL: Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management ()
Biobank
Contact: David B. Badesch
Address:
URL: http://www.revealregistry.com/
04/05/2017
New Registry Published: Danish cystic fibrosis patient registry
Registry Danish cystic fibrosis patient registry from Denmark was published an is now listed in the catalouge.
Danish cystic fibrosis patient registry
Registry
--Maincontact--

04/05/2017
New Registry Published: German Cushing's Registry
Registry German Cushing's Registry from Germany was published an is now listed in the catalouge.
German Cushing's Registry
Registry
--Maincontact--

04/05/2017
New Registry Published: Primary Sjögren's Syndrome Registry (UKPSSR) 
Registry Primary Sjögren's Syndrome Registry (UKPSSR)  from United Kingdom was published an is now listed in the catalouge.
United Kingdom Primary Sjögren’s Syndrome Registry
Registry
--Maincontact--

04/05/2017
New Registry Published: Sjögren's International Collaborative Clinical Alliance registry
Registry Sjögren's International Collaborative Clinical Alliance registry from all was published an is now listed in the catalouge.
Sjögren's International Collaborative Clinical Alliance registry
Registry
--Maincontact--

04/05/2017
  Candidate Propose
Paola Torreri proposed the Registry Sjögren's International Collaborative Clinical Alliance registry for all.
Paola Torreri proposed the Registry Sjögren's International Collaborative Clinical Alliance registry for all.
Sjögren's International Collaborative Clinical Alliance registry (SICCA)
Registry
Contact: Caroline Shiboski
Address: Jerome L. Greene Sjögren’s Syndrome Center 5200 Eastern Avenue, Suite 4000, Room 413 Mason F. Lord Building, Center Tower Baltimore, Maryland 21224
URL: https://www.hopkinssjogrens.org/research/sicca-project/
03/05/2017
  Candidate Propose
Furusawa proposed the Biobank amed for Japan.
Furusawa proposed the Biobank amed for Japan.
amed ()
Biobank
Contact: Furusawa
Address:
URL:
03/05/2017
New Registry Published: UK Cystic Fibrosis Registry
Registry UK Cystic Fibrosis Registry from United Kingdom was published an is now listed in the catalouge.
UK Cystic Fibrosis Registry
Registry
--Maincontact--

03/05/2017
New Registry Published: French certified patient registry for Langerhans cell histiocytosis
Registry French certified patient registry for Langerhans cell histiocytosis from France was published an is now listed in the catalouge.
French registry for Langerhans cell histiocytosis
Registry
--Maincontact--

02/05/2017
New Registry Published: German acromegaly registry
Registry German acromegaly registry from Germany was published an is now listed in the catalouge.
German acromegaly registry
Registry
--Maincontact--

02/05/2017
New Registry Published: Austrian acromegaly registry
Registry Austrian acromegaly registry from Austria was published an is now listed in the catalouge.
Austrian acromegaly registry
Registry
--Maincontact--

02/05/2017
New Registry Published: Austrian GIST registry
Registry Austrian GIST registry from Austria was published an is now listed in the catalouge.
Austrian GIST registry
Registry
--Maincontact--

20/04/2017
New Registry Published: Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
Registry Neonatal Alloimmune Thrombocytopenia (NAIT) Registry from Australia was published an is now listed in the catalouge.
Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
Registry
--Maincontact--

20/04/2017
  Candidate Propose
Paola Torreri proposed the Registry Neonatal Alloimmune Thrombocytopenia (NAIT) Registry for Australia.
Paola Torreri proposed the Registry Neonatal Alloimmune Thrombocytopenia (NAIT) Registry for Australia.
Neonatal Alloimmune Thrombocytopenia (NAIT) Registry ()
Registry
Contact: Ri Scarborough
Address:
URL: http://www.torc.org.au/nait
19/04/2017
New Registry Published: French certified registry of patients affected by Gaucher disease
Registry French certified registry of patients affected by Gaucher disease from France was published an is now listed in the catalouge.
French Gaucher’s disease registry
Registry
--Maincontact--

19/04/2017
New Registry Published: CEREDIH: French primary immunodeficiencies registry
Registry CEREDIH: French primary immunodeficiencies registry from France was published an is now listed in the catalouge.
French primary immunodeficiencies registry
Registry
--Maincontact--

19/04/2017
New Biobank Published: Hacettepe DNA/Cell Bank for Rare Diseases
Biobank Hacettepe DNA/Cell Bank for Rare Diseases from Turkey was published an is now listed in the catalouge.
Hacettepe DNA/Cell Bank for Rare Diseases
Biobank
--Maincontact--

19/04/2017
[$logoleft$]Biobank requesed a pannel assessment: Hacettepe DNA/Cell Bank for Rare Diseases[$logoright$]
Biobank Hacettepe DNA/Cell Bank for Rare Diseases from Turkey requesed a pannel assessment.
[$longtext$]
19/04/2017
  Candidate Propose
Meral Ozguc proposed the Biobank Hacettepe University Biobank for Rare Diseases for Turkey.
Meral Ozguc proposed the Biobank Hacettepe University Biobank for Rare Diseases for Turkey.
Hacettepe University Biobank for Rare Diseases (HURARE)
Biobank
Contact: Meral Özgüç
Address: Hacettepe University Faculty of Medicine 06100 Sıhhiye Ankara Turkey
URL:
14/04/2017
New Registry Published: Aquitain registry of Mesothelioma
Registry Aquitain registry of Mesothelioma from France was published an is now listed in the catalouge.
Aquitain registry of Mesothelioma
Registry
--Maincontact--

13/04/2017
New Registry Published: Register of Congenital Malformations
Registry Register of Congenital Malformations from Finland was published an is now listed in the catalouge.
Register of Congenital Malformations
Registry
--Maincontact--

13/04/2017
New Registry Published: Finnish IPF registry
Registry Finnish IPF registry from Finland was published an is now listed in the catalouge.
Finnish IPF registry
Registry
--Maincontact--

13/04/2017
New Registry Published: Czech national Diamond-Blackfan Anemia Registry
Registry Czech national Diamond-Blackfan Anemia Registry from Czech Republic was published an is now listed in the catalouge.
Czech national Diamond-Blackfan Anemia Registry
Registry
--Maincontact--

03/04/2017
New Registry Published: Diamond Blackfan Anemia Registry of North America
Registry Diamond Blackfan Anemia Registry of North America from United States was published an is now listed in the catalouge.
Diamond Blackfan Anemia Registry of North America
Registry
--Maincontact--

03/04/2017
  Candidate Propose
Paola Torreri proposed the Registry Diamond Blackfan Anemia Registry of North America for United States.
Paola Torreri proposed the Registry Diamond Blackfan Anemia Registry of North America for United States.
Diamond Blackfan Anemia Registry of North America ()
Registry
Contact: Eva Atsidaftos
Address:
URL: http://dbafoundation.org/families/dba-registry/
28/03/2017
New Biobank Published: INSERM Unit 1048, Toulouse
Biobank INSERM Unit 1048, Toulouse from France was published an is now in the list redy for the pannel assessment invitation.
INSERM Unit 1048, Toulouse
Biobank
--Maincontact--

28/03/2017
New Biobank Published: IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, Bergamo
Biobank IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, Bergamo from Italy was published an is now in the list redy for the pannel assessment invitation.
IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, Bergamo
Biobank
--Maincontact--

28/03/2017
New Biobank Published: Katholieke Universiteit Leuven
Biobank Katholieke Universiteit Leuven from Belgium was published an is now in the list redy for the pannel assessment invitation.
Katholieke Universiteit Leuven
Biobank
--Maincontact--

28/03/2017
New Biobank Published: Heidelberg University Medical Center
Biobank Heidelberg University Medical Center from Germany was published an is now in the list redy for the pannel assessment invitation.
Division of Pediatric Nephrology Biobank
Biobank
--Maincontact--

28/03/2017
New Biobank Published: University Medical Center Utrecht
Biobank University Medical Center Utrecht from Netherlands was published an is now in the list redy for the pannel assessment invitation.
University Medical Center Utrecht
Biobank
--Maincontact--

28/03/2017
New Biobank Published: Radboud UMC Nijmegen
Biobank Radboud UMC Nijmegen from Netherlands was published an is now in the list redy for the pannel assessment invitation.
Radboud UMC Nijmegen
Biobank
--Maincontact--

28/03/2017
New Biobank Published: Madrid
Biobank Madrid from Spain was published an is now in the list redy for the pannel assessment invitation.
Centro de Investigaciones Biológicas
Biobank
--Maincontact--

28/03/2017
New Biobank Published: Newcastle University
Biobank Newcastle University from United Kingdom was published an is now in the list redy for the pannel assessment invitation.
Newcastle University
Biobank
--Maincontact--

28/03/2017
New Biobank Published: University of Zurich
Biobank University of Zurich from Switzerland was published an is now in the list redy for the pannel assessment invitation.
University of Zurich
Biobank
--Maincontact--

28/03/2017
New Biobank Published: Hacettepe University Faculty of Medicine, Turkey
Biobank Hacettepe University Faculty of Medicine, Turkey from Turkey was published an is now in the list redy for the pannel assessment invitation.
Hacettepe University Faculty of Medicine, Turkey
Biobank
--Maincontact--

23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, Bergamo for Italy.
Robert Reihs proposed the Biobank IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, Bergamo for Italy.
IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, Bergamo ()
Biobank
Contact: Giuseppe Remuzzi
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Radboud UMC Nijmegen for Netherlands.
Robert Reihs proposed the Biobank Radboud UMC Nijmegen for Netherlands.
Radboud UMC Nijmegen ()
Biobank
Contact: René Bindels
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank University Medical Center Utrecht for Netherlands.
Robert Reihs proposed the Biobank University Medical Center Utrecht for Netherlands.
University Medical Center Utrecht ()
Biobank
Contact: Nine Knoers
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Radboud UMC Nijmegen for Netherlands.
Robert Reihs proposed the Biobank Radboud UMC Nijmegen for Netherlands.
Radboud UMC Nijmegen ()
Biobank
Contact: Jack Wetzels
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Hopital Tenon, Paris for France.
Robert Reihs proposed the Biobank Hopital Tenon, Paris for France.
Hopital Tenon, Paris ()
Biobank
Contact: Pierre Ronco
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank INSERM, IMAGINE Institute, Paris for France.
Robert Reihs proposed the Biobank INSERM, IMAGINE Institute, Paris for France.
INSERM, IMAGINE Institute, Paris ()
Biobank
Contact: Corinne Antignac
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Heidelberg University Medical Center for Germany.
Robert Reihs proposed the Biobank Heidelberg University Medical Center for Germany.
Heidelberg University Medical Center ()
Biobank
Contact: Franz Schaefer
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Hacettepe University Faculty of Medicine, Turkey for Turkey.
Robert Reihs proposed the Biobank Hacettepe University Faculty of Medicine, Turkey for Turkey.
Hacettepe University Faculty of Medicine, Turkey ()
Biobank
Contact: Fatih Ozaltin
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank INSERM UMR_S702, Paris for France.
Robert Reihs proposed the Biobank INSERM UMR_S702, Paris for France.
INSERM UMR_S702, Paris ()
Biobank
Contact: Xavier Jeunemaître
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Katholieke Universiteit Leuven for Belgium.
Robert Reihs proposed the Biobank Katholieke Universiteit Leuven for Belgium.
Katholieke Universiteit Leuven ()
Biobank
Contact: Elena Levtchenko
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank INSERM Unit 1048, Toulouse for France.
Robert Reihs proposed the Biobank INSERM Unit 1048, Toulouse for France.
INSERM Unit 1048, Toulouse ()
Biobank
Contact: Joost P. Schanstra
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Madrid for Spain.
Robert Reihs proposed the Biobank Madrid for Spain.
Madrid ()
Biobank
Contact: Santiago-Rodriguez de Cordoba
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Assistance Publique-Hôpitaux de Paris for France.
Robert Reihs proposed the Biobank Assistance Publique-Hôpitaux de Paris for France.
Assistance Publique-Hôpitaux de Paris ()
Biobank
Contact: Véronique Frémeaux-Bacchi
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank Newcastle University for United Kingdom.
Robert Reihs proposed the Biobank Newcastle University for United Kingdom.
Newcastle University ()
Biobank
Contact: David Kavanagh
Address:
URL:
23/03/2017
  Candidate Propose
Robert Reihs proposed the Biobank University of Zurich for Switzerland.
Robert Reihs proposed the Biobank University of Zurich for Switzerland.
University of Zurich ()
Biobank
Contact: Olivier Devuyst
Address:
URL:
22/03/2017
New Biobank Published: Hertie Biobank
Biobank Hertie Biobank from Germany was published an is now in the list redy for the pannel assessment invitation.
Hertie Biobank
Biobank
--Maincontact--

22/03/2017
  Candidate Propose
Mary Wang proposed the Biobank Hertie Biobank for Germany.
Mary Wang proposed the Biobank Hertie Biobank for Germany.
Hertie Biobank ()
Biobank
Contact: Rebecca Schuele
Address:
URL:
22/03/2017
New Biobank Published: CIBERER Biobank
Biobank CIBERER Biobank from Spain was published an is now listed in the catalouge.
CIBERER Biobank
Biobank
--Maincontact--

22/03/2017
New Biobank Published: EUROSCA-R: European biobank on spinocerebellar ataxias
Biobank EUROSCA-R: European biobank on spinocerebellar ataxias from Germany was published an is now in the list redy for the pannel assessment invitation.
DZNE Biobank
Biobank
--Maincontact--

22/03/2017
New Biobank Published: UCL Huntington's disease biobank
Biobank UCL Huntington's disease biobank from United Kingdom was published an is now in the list redy for the pannel assessment invitation.
UCL Huntington's disease biobank
Biobank
--Maincontact--

22/03/2017
New Biobank Published: GeNeMove
Biobank GeNeMove from Germany was published an is now in the list redy for the pannel assessment invitation.
GeNeMove
Biobank
--Maincontact--

22/03/2017
New Biobank Published: SPATAX
Biobank SPATAX from International was published an is now in the list redy for the pannel assessment invitation.
SPATAX and INSERM Biobank
Biobank
--Maincontact--

09/03/2017
  Candidate Propose
Alison Turner proposed the Registry The RUDY Study for United Kingdom.
Alison Turner proposed the Registry The RUDY Study for United Kingdom.
The RUDY Study (RUDY)
Registry
Contact: Dr Kassim Javaid
Address: Botnar Research Centre, University of Oxford
URL:
14/02/2017
[$logoleft$]Biobank requesed a pannel assessment: Incontinentia Pigmenti Genetic BioBank[$logoright$]
Biobank Incontinentia Pigmenti Genetic BioBank from - requesed a pannel assessment.
[$longtext$]
10/02/2017
New Biobank Published: Congenital Muscle Disease Tissue Repository
Biobank Congenital Muscle Disease Tissue Repository from United States was published an is now in the list redy for the pannel assessment invitation.
Congenital Muscle Disease Tissue Repository
Biobank
--Maincontact--

10/02/2017
New Biobank Published: Hospital Universitari Vall d’Hebron Biobank
Biobank Hospital Universitari Vall d’Hebron Biobank from Spain was published an is now in the list redy for the pannel assessment invitation.
Hospital Universitari Vall d’Hebron Biobank
Biobank
--Maincontact--

07/02/2017
New Biobank Published: NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA
Biobank NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA from Slovenia was published an is now listed in the catalouge.
NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA
Biobank
--Maincontact--

07/02/2017
New Biobank Published: National Laboratory for the Genetics of Israeli Populations
Biobank National Laboratory for the Genetics of Israeli Populations from Israel was published an is now listed in the catalouge.
National Laboratory for the Genetics of Israeli Populations
Biobank
--Maincontact--

01/02/2017
New Registry Published: Spanish Rheumatology Society Lupus Registry
Registry Spanish Rheumatology Society Lupus Registry from Spain was published an is now listed in the catalouge.
Spanish Rheumatology Society Lupus Registry
Registry
--Maincontact--

01/02/2017
  Candidate Propose
Paola Torreri proposed the Registry Spanish Rheumatology Society Lupus Registry for Spain.
Paola Torreri proposed the Registry Spanish Rheumatology Society Lupus Registry for Spain.
Spanish Rheumatology Society Lupus Registry ()
Registry
Contact: Iñigo Rúa-Figueroa
Address:
URL: https://relesser.ser.es
31/01/2017
New Registry Published: COHORT
Registry COHORT from United States was published an is now listed in the catalouge.
COHORT

--Maincontact--

31/01/2017
  Candidate Propose
Paola Torreri proposed the Registry COHORT for United States.
Paola Torreri proposed the Registry COHORT for United States.
COHORT ()
Registry
Contact: Ashley Nasuti
Address: Coriell Institute
URL: https://catalog.coriell.org/0/Sections/Collections/COHORT/Overview.aspx?PgId=529&coll=HQ
31/01/2017
New Registry Published: Turkish pediatric atypical hemolytic uremic syndrome registry
Registry Turkish pediatric atypical hemolytic uremic syndrome registry from Turkey was published an is now listed in the catalouge.
Turkish pediatric atypical hemolytic uremic syndrome registry
Registry
--Maincontact--

31/01/2017
  Candidate Propose
Paola Torreri proposed the Registry Turkish pediatric atypical hemolytic uremic syndrome registry for Turkey.
Paola Torreri proposed the Registry Turkish pediatric atypical hemolytic uremic syndrome registry for Turkey.
Turkish pediatric atypical hemolytic uremic syndrome registry ()
Registry
Contact: Fatih Ozaltin
Address:
URL: http://www.ahusnet.org/
24/01/2017
New Registry Published: Motor Function Measure database (Neuromuscular Diseases)
Registry Motor Function Measure database (Neuromuscular Diseases) from France was published an is now listed in the catalouge.
Motor Function Measure database (Neuromuscular Diseases)
Registry
--Maincontact--

18/01/2017
[$logoleft$]Biobank requesed a pannel assessment: National Laboratory for the Genetics of Israeli Populations[$logoright$]
Biobank National Laboratory for the Genetics of Israeli Populations from Israel requesed a pannel assessment.
[$longtext$]
18/01/2017
New Biobank Published: Incontinentia Pigmenti Genetic BioBank
Biobank Incontinentia Pigmenti Genetic BioBank from Italy was published an is now in the list redy for the pannel assessment invitation.
Incontinentia Pigmenti Genetic BioBank
Biobank
--Maincontact--

18/01/2017
New Biobank Published: Molecular Medicine Research Center Biobank
Biobank Molecular Medicine Research Center Biobank from Cyprus was published an is now in the list redy for the pannel assessment invitation.
Molecular Medicine Research Center Biobank
Biobank
--Maincontact--

12/12/2016
[$logoleft$]Biobank requesed a pannel assessment: CIBERER Biobank[$logoright$]
Biobank CIBERER Biobank from Spain requesed a pannel assessment.
[$longtext$]
04/12/2016
  Candidate Propose
Stanislav Vohanka proposed the Registry Autoimmune Neuromuscular Diseases for Czech Republic.
Stanislav Vohanka proposed the Registry Autoimmune Neuromuscular Diseases for Czech Republic.
Autoimmune Neuromuscular Diseases (AINSO)
Registry
Contact: Josef Bednarik
Address: University Hospital and Masaryk University Brno
URL: http://www.ainso.cz/
30/11/2016
New Registry Published: Registry of Myasthenia Gravis
Registry Registry of Myasthenia Gravis from Czech Republic was published an is now listed in the catalouge.
Registry of Myasthenia Gravis
Registry
--Maincontact--

30/11/2016
  Candidate Propose
Stanislav Vohanka proposed the Registry Registry of Myasthenia Gravis for Czech Republic.
Stanislav Vohanka proposed the Registry Registry of Myasthenia Gravis for Czech Republic.
Registry of Myasthenia Gravis (MyReg)
Registry
Contact: Stanislav Vohanka
Address: Masaryk University Brno
URL: http://myreg.registry.cz/index.php
24/11/2016
Network Updated
The [url organization 211940]Fondazione Telethon[urlend] added the Biobank: [url organization 77761]Parkinson Institute Biobank[urlend] to the network.
Fondazione Telethon
Network
--Maincontact--

24/11/2016
Network Updated
The [url organization 211940]Fondazione Telethon[urlend] added the Biobank: [url organization 77489]Neuromuscular Bank of Tissues and DNA samples[urlend] to the network.
Fondazione Telethon
Network
--Maincontact--

24/11/2016
Network Updated
The [url organization 211940]Fondazione Telethon[urlend] added the Biobank: [url organization 77088]Genomic and Genetic Disorders Biobank[urlend] to the network.
Fondazione Telethon
Network
--Maincontact--

24/11/2016
Network Updated
The [url organization 211940]Fondazione Telethon[urlend] added the Biobank: [url organization 77350]Galliera Genetic Bank[urlend] to the network.
Fondazione Telethon
Network
--Maincontact--

24/11/2016
Network Updated
The [url organization 211940]Fondazione Telethon[urlend] added the Biobank: [url organization 62316]Cell line and DNA Biobank from patients affected by Genetic Diseases[urlend] to the network.
Fondazione Telethon
Network
--Maincontact--

22/11/2016
New Registry Published: Enroll-HD
Registry Enroll-HD from International was published an is now listed in the catalouge.
Enroll-HD
Registry
--Maincontact--

18/11/2016
New Registry Published: RUDY
Registry RUDY from United Kingdom was published an is now listed in the catalouge.
RUDY
Registry
--Maincontact--

18/11/2016
  Candidate Propose
Paola Torreri proposed the Registry RUDY for United Kingdom.
Paola Torreri proposed the Registry RUDY for United Kingdom.
RUDY ()
Registry
Contact: Alison Turner
Address:
URL: https://research.ndorms.ox.ac.uk/rudy/
15/11/2016
New Registry Published: Fight NPC
Registry Fight NPC from all was published an is now listed in the catalouge.
Fight NPC (Niemann-Pick Type C)
Registry
--Maincontact--

15/11/2016
  Candidate Propose
Robert Reihs proposed the Registry Fight NPC for all.
Robert Reihs proposed the Registry Fight NPC for all.
Fight NPC ()
Registry
Contact: Brian Chan
Address:
URL: http://fightnpc.com/en/
11/11/2016
New Registry Published: French national registry for thrombotic microangiopathy
Registry French national registry for thrombotic microangiopathy from France was published an is now listed in the catalouge.
French national registry for thrombotic microangiopathy
Registry
--Maincontact--

09/11/2016
New Registry Published: UKIVAS registry
Registry UKIVAS registry from United Kingdom was published an is now listed in the catalouge.
UKIVAS registry
Registry
--Maincontact--

09/11/2016
  Candidate Propose
Paola Torreri proposed the Registry UKIVAS registry for United Kingdom.
Paola Torreri proposed the Registry UKIVAS registry for United Kingdom.
UKIVAS registry ()
Registry
Contact: Richard Watts
Address:
URL: https://research.ndorms.ox.ac.uk/public/ukvas/index.php
08/11/2016
New Registry Published: Primary Immunodeficiency Diseases Registry at USIDNET
Registry Primary Immunodeficiency Diseases Registry at USIDNET from United States was published an is now listed in the catalouge.
Primary Immunodeficiency Diseases Registry at USIDNET
Registry
--Maincontact--

08/11/2016
  Candidate Propose
Paola Torreri proposed the Registry Primary Immunodeficiency Diseases Registry at USIDNET for United States.
Paola Torreri proposed the Registry Primary Immunodeficiency Diseases Registry at USIDNET for United States.
Primary Immunodeficiency Diseases Registry at USIDNET ()
Registry
Contact: Charlotte Cunningham-Rundles
Address:
URL: https://usidnet.org/usidnet-registry/
07/11/2016
New Registry Published: The national Polish pediatric IgAN registry
Registry The national Polish pediatric IgAN registry from Poland was published an is now listed in the catalouge.
The national Polish pediatric IgAN registry
Registry
--Maincontact--

07/11/2016
  Candidate Propose
Paola Torreri proposed the Registry The national Polish pediatric IgAN registry for Poland.
Paola Torreri proposed the Registry The national Polish pediatric IgAN registry for Poland.
The national Polish pediatric IgAN registry ()
Registry
Contact: Mieczyslaw Pokorski
Address:
URL: http://www.wsm.opole.pl/pl/dla-studenta/wydzial-poloznictwa
07/11/2016
New Registry Published: The italian limb girdle muscular dystrophy registry
Registry The italian limb girdle muscular dystrophy registry from Italy was published an is now listed in the catalouge.
Italian limb girdle muscular dystrophy registry
Registry
--Maincontact--

07/11/2016
New Registry Published: Belgian alpha-1 antitrypsin deficiency registry
Registry Belgian alpha-1 antitrypsin deficiency registry from Belgium was published an is now listed in the catalouge.
Belgian alpha-1 antitrypsin deficiency registry
Registry
--Maincontact--

07/11/2016
New Registry Published: the International Thymic Malignancy Interest Group International Database
Registry the International Thymic Malignancy Interest Group International Database from all was published an is now listed in the catalouge.
Thymic Malignancy Interest Group International Database
Registry
--Maincontact--

07/11/2016
  Candidate Propose
Paola Torreri proposed the Registry the International Thymic Malignancy Interest Group International Database for all.
Paola Torreri proposed the Registry the International Thymic Malignancy Interest Group International Database for all.
the International Thymic Malignancy Interest Group International Database ()
Registry
Contact: James Huang
Address:
URL: https://www.itmig.org/
07/11/2016
New Registry Published: The Italian multi-region thalassaemia registry (HTATHAL)
Registry The Italian multi-region thalassaemia registry (HTATHAL) from Italy was published an is now listed in the catalouge.
The Italian multi-region thalassaemia registry
Registry
--Maincontact--

07/11/2016
  Candidate Propose
Paola Torreri proposed the Registry The Italian multi-region thalassaemia registry (HTATHAL) for Italy.
Paola Torreri proposed the Registry The Italian multi-region thalassaemia registry (HTATHAL) for Italy.
The Italian multi-region thalassaemia registry (HTATHAL) ()
Registry
Contact: Rosa Conte
Address:
URL: http://www.cvbf.net/tag/hta-thal-registry
07/11/2016
New Registry Published: The international ARPKD registry
Registry The international ARPKD registry from Germany was published an is now listed in the catalouge.
The international ARPKD registry
Registry
--Maincontact--

07/11/2016
  Candidate Propose
Paola Torreri proposed the Registry The international ARPKD registry for Germany.
Paola Torreri proposed the Registry The international ARPKD registry for Germany.
The international ARPKD registry ()
Registry
Contact: Max Christoph Liebau
Address:
URL: https://www.aregpkd.org/index.php?id=about_aregpkd
04/11/2016
New Registry Published: International Consortium for the Research on Alternating Hemiplegia of Childhood
Registry International Consortium for the Research on Alternating Hemiplegia of Childhood from all was published an is now listed in the catalouge.
The International Consortium for the Research on Alternating Hemiplegia of Childhood
Registry
--Maincontact--

04/11/2016
  Candidate Propose
Paola Torreri proposed the Registry International Consortium for the Research on AHC for all.
Paola Torreri proposed the Registry International Consortium for the Research on AHC for all.
International Consortium for the Research on AHC ()
Registry
Contact: Rosaria Vavassori
Address:
URL: http://iahcrc.net/
04/11/2016
New Registry Published: Italian Registry of Mastocytosis
Registry Italian Registry of Mastocytosis from Italy was published an is now listed in the catalouge.
Italian Registry of Mastocytosis
Registry
--Maincontact--

04/11/2016
  Candidate Propose
Paola Torreri proposed the Registry Italian Registry of Mastocytosis for Italy.
Paola Torreri proposed the Registry Italian Registry of Mastocytosis for Italy.
Italian Registry of Mastocytosis ()
Registry
Contact: Serena Merante
Address:
URL: http://www.registroitalianomastocitosi.it/rim/home/home.htm
04/11/2016
New Registry Published: Rare Epilepsy Network
Registry Rare Epilepsy Network from United States was published an is now listed in the catalouge.
Rare Epilepsy Network
Registry
--Maincontact--

04/11/2016
  Candidate Propose
Paola Torreri proposed the Registry Rare Epilepsy Network for United States.
Paola Torreri proposed the Registry Rare Epilepsy Network for United States.
Rare Epilepsy Network ()
Registry
Contact: Janice M. Buelow
Address:
URL: https://ren.rti.org/
04/11/2016
New Registry Published: PanGen-Fam: Spanish registry of hereditary pancreatic cancer
Registry PanGen-Fam: Spanish registry of hereditary pancreatic cancer from Spain was published an is now listed in the catalouge.
PanGen-Fam: Spanish registry of hereditary pancreatic cancer
Registry
--Maincontact--

04/11/2016
  Candidate Propose
Paola Torreri proposed the Biobank PanGen-Fam: Spanish registry of hereditary pancreatic cancer for all.
Paola Torreri proposed the Biobank PanGen-Fam: Spanish registry of hereditary pancreatic cancer for all.
PanGen-Fam: Spanish registry of hereditary pancreatic cancer ()
Biobank
Contact: Carmen Guillén Ponce
Address:
URL: http://www.madrid.org/cs/Satellite?cid=1142650231720&language=es&pageid=1142404671257&pagename=HospitalRamonCajal%2FCM_Actualidad_FA%2FHRYC_actualidad
03/11/2016
New Registry Published: Swedish national register of severe alpha1-antitrypsin
Registry Swedish national register of severe alpha1-antitrypsin from Sweden was published an is now listed in the catalouge.
Swedish national register of severe alpha1-antitrypsin
Registry
--Maincontact--

03/11/2016
  Candidate Propose
Paola Torreri proposed the Registry Swedish national register of severe alpha1-antitrypsin for Sweden.
Paola Torreri proposed the Registry Swedish national register of severe alpha1-antitrypsin for Sweden.
Swedish national register of severe alpha1-antitrypsin ()
Registry
Contact: Hanan Tanash
Address:
URL: http://www.lu.se/forskning
03/11/2016
New Registry Published: Alpha 1 International Registry (AIR)
Registry Alpha 1 International Registry (AIR) from all was published an is now listed in the catalouge.
Alpha 1 International Registry (AIR)
Registry
--Maincontact--

03/11/2016
  Candidate Propose
Paola Torreri proposed the Registry Alpha 1 International Registry (AIR) for all.
Paola Torreri proposed the Registry Alpha 1 International Registry (AIR) for all.
Alpha 1 International Registry (AIR) ()
Registry
Contact: Jan Stolk
Address:
URL: http://antitrypsindeficiency.org/
03/11/2016
New Registry Published: International registry for biologics in systemic lupus erythematosus (IRBIS)
Registry International registry for biologics in systemic lupus erythematosus (IRBIS) from all was published an is now listed in the catalouge.
International registry for biologics in systemic lupus erythematosus (IRBIS)
Registry
--Maincontact--

03/11/2016
  Candidate Propose
Paola Torreri proposed the Registry International registry for biologics in systemic lupus erythematosus (IRBIS) for all.
Paola Torreri proposed the Registry International registry for biologics in systemic lupus erythematosus (IRBIS) for all.
International registry for biologics in systemic lupus erythematosus (IRBIS) ()
Registry
Contact: Anna Andersson
Address:
URL: http://ki.se/en/meds/irbis
03/11/2016
New Biobank Published: Clinical Institute of Laboratory Diagnosis, University Hospital Center Zagreb
Biobank Clinical Institute of Laboratory Diagnosis, University Hospital Center Zagreb from Croatia was published an is now in the list redy for the pannel assessment invitation.
Clinical Unit for Inherited Metabolic Diseases
Biobank
--Maincontact--

03/11/2016
  Candidate Propose
Mary Wang proposed the Biobank Clinical Institute of Laboratory Diagnosis, University Hospital Center Zagreb for Croatia.
Mary Wang proposed the Biobank Clinical Institute of Laboratory Diagnosis, University Hospital Center Zagreb for Croatia.
Clinical Institute of Laboratory Diagnosis, University Hospital Center Zagreb ()
Biobank
Contact: Ksenija Fumić
Address: Kišpatićeva 12, 10 000 Zagreb, CROATIA
URL:
02/11/2016
New Registry Published: Italian registry of patients with alpha-1 antitrypsin deficiency
Registry Italian registry of patients with alpha-1 antitrypsin deficiency from Italy was published an is now listed in the catalouge.
Italian registry of patients with alpha-1 antitrypsin deficiency
Registry
--Maincontact--

02/11/2016
  Candidate Propose
Paola Torreri proposed the Registry Italian registry of patients with alpha-1 antitrypsin deficiency for Italy.
Paola Torreri proposed the Registry Italian registry of patients with alpha-1 antitrypsin deficiency for Italy.
Italian registry of patients with alpha-1 antitrypsin deficiency ()
Registry
Contact: Ilaria Ferrarotti
Address:
URL: http://alfa1antitripsina.it/it
02/11/2016
New Registry Published: Australian Motor Neurone Disease Registry (AMNDR)
Registry Australian Motor Neurone Disease Registry (AMNDR) from Australia was published an is now listed in the catalouge.
Australian Motor Neurone Disease Registry (AMNDR)
Registry
--Maincontact--

02/11/2016
  Candidate Propose
Paola Torreri proposed the Registry Australian Motor Neurone Disease Registry (AMNDR) for Australia.
Paola Torreri proposed the Registry Australian Motor Neurone Disease Registry (AMNDR) for Australia.
Australian Motor Neurone Disease Registry (AMNDR) ()
Registry
Contact: Paul Talman
Address:
URL: http://www.mndaust.asn.au/Discover-our-research/Latest-research/AMNDR.aspx
02/11/2016
New Registry Published: INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis
Registry INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis from Germany was published an is now listed in the catalouge.
INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis
Registry
--Maincontact--

02/11/2016
  Candidate Propose
Paola Torreri proposed the Registry INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis for Germany.
Paola Torreri proposed the Registry INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis for Germany.
INSIGHTS-IPF Investigating Significant Health Trends in Idiopathic Pulmonary Fibrosis ()
Registry
Contact: Juergen Behr
Address:
URL: https://www.insights-ipf.de/node/1
02/11/2016
New Registry Published: CURE-Net : National registry for congenital uro-rectal malformations
Registry CURE-Net : National registry for congenital uro-rectal malformations from Germany was published an is now listed in the catalouge.
CURE-Net : National registry for congenital uro-rectal malformations
Registry
--Maincontact--

31/10/2016
  Candidate Propose
Paola Torreri proposed the Registry European IPF Registry and Biobank for all.
Paola Torreri proposed the Registry European IPF Registry and Biobank for all.
European IPF Registry and Biobank ()
Registry
Contact: Andreas Günther
Address: Universities of Giessen and Marburg
URL: http://www.pulmonary-fibrosis.net/index.php
31/10/2016
New Registry Published: EUROMAC
Registry EUROMAC from all was published an is now listed in the catalouge.
EUROMAC: European Registry of McArdle Disease
Registry
--Maincontact--

31/10/2016
  Candidate Propose
Paola Torreri proposed the Registry EUROMAC for all.
Paola Torreri proposed the Registry EUROMAC for all.
EUROMAC ()
Registry
Contact: Dr. Ramon Martí
Address:
URL: http://euromacregistry.eu/portal1/default.asp
31/10/2016
New Registry Published: E-HOD: European network and registry for homocystinurias and methylation defects
Registry E-HOD: European network and registry for homocystinurias and methylation defects from all was published an is now listed in the catalouge.
E-HOD: European network and registry for homocystinurias and methylation defects
Registry
--Maincontact--

31/10/2016
  Candidate Propose
Paola Torreri proposed the Registry E-HOD: European network and registry for homocystinurias and methylation defects for all.
Paola Torreri proposed the Registry E-HOD: European network and registry for homocystinurias and methylation defects for all.
E-HOD: European network and registry for homocystinurias and methylation defects ()
Registry
Contact: Marike Groenendijk
Address:
URL: http://www.e-hod.org/description-of-the-project
28/10/2016
New Registry Published: EUROFEVER: European registry for autoinflammatory diseases
Registry EUROFEVER: European registry for autoinflammatory diseases from Italy was published an is now listed in the catalouge.
EUROFEVER: European registry for autoinflammatory diseases
Registry
--Maincontact--

27/10/2016
New Registry Published: Kids Lung Register: International register and biobank for rare lung diseases
Registry Kids Lung Register: International register and biobank for rare lung diseases from Germany was published an is now listed in the catalouge.
Kids Lung Register: International register and biobank for rare lung diseases
Registry
--Maincontact--

27/10/2016
New Registry Published: Pompe Disease
Registry Pompe Disease from France was published an is now listed in the catalouge.
French Pompe registry
Registry
--Maincontact--

27/10/2016
New Registry Published: New Zealand Neuromuscular Disease Registry
Registry New Zealand Neuromuscular Disease Registry from New Zealand was published an is now listed in the catalouge.
New Zealand Neuromuscular Disease Registry
Registry
--Maincontact--

27/10/2016
  Candidate Propose
Paola Torreri proposed the Registry New Zealand Neuromuscular Disease Registry for New Zealand.
Paola Torreri proposed the Registry New Zealand Neuromuscular Disease Registry for New Zealand.
New Zealand Neuromuscular Disease Registry ()
Registry
Contact: Miriam Rodrigues
Address:
URL: http://www.mda.org.nz/what-we-do/nz-neuromuscular-disease-registry/
18/10/2016
New Registry Published: Alpha-1 Foundation Research Registry
Registry Alpha-1 Foundation Research Registry from United States was published an is now listed in the catalouge.
Alpha-1 Foundation Research Registry
Registry
--Maincontact--

18/10/2016
  Candidate Propose
Paola Torreri proposed the Registry Alpha-1 Foundation Research Registry for United States.
Paola Torreri proposed the Registry Alpha-1 Foundation Research Registry for United States.
Alpha-1 Foundation Research Registry ()
Registry
Contact: Alysha Carlos
Address:
URL: https://alphaoneregistry.org/research_registry
12/10/2016
New Registry Published: Nordic Database for Rare Diseases
Registry Nordic Database for Rare Diseases from all was published an is now listed in the catalouge.
Nordic Database for Rare Diseases
Registry
--Maincontact--

12/10/2016
  Candidate Propose
Paola Torreri proposed the Registry Nordic Database for Rare Diseases for all.
Paola Torreri proposed the Registry Nordic Database for Rare Diseases for all.
Nordic Database for Rare Diseases ()
Registry
Contact: Ketil Heimdal
Address:
URL: https://raredis.eu/
06/10/2016
New Registry Published: Registro Italiano Angioedema Ereditario
Registry Registro Italiano Angioedema Ereditario from Italy was published an is now listed in the catalouge.
The Italian Registry of Hereditary Angioedema
Registry
--Maincontact--

06/10/2016
  Candidate Propose
Yllka Kodra proposed the Registry Registro Italiano Angioedema Ereditario for Italy.
Yllka Kodra proposed the Registry Registro Italiano Angioedema Ereditario for Italy.
Registro Italiano Angioedema Ereditario ()
Registry
Contact: Marco Cicardi
Address:
URL:
06/09/2016
New Registry Published: Belgian Neuromuscular Disease Registry
Registry Belgian Neuromuscular Disease Registry from Belgium was published an is now listed in the catalouge.
Belgian Neuromuscular Disease Registry
Registry
--Maincontact--

06/09/2016
New Registry Published: HAM-net national patient registration system
Registry HAM-net national patient registration system from Japan was published an is now listed in the catalouge.
HAM-net national patient registration system
Registry
--Maincontact--

06/09/2016
  Candidate Propose
Yllka Kodra proposed the Registry HAM-net national patient registration system for Japan.
Yllka Kodra proposed the Registry HAM-net national patient registration system for Japan.
HAM-net national patient registration system (HAM-net)
Registry
Contact: YAMANO Yoshihisa
Address:
URL: http://hamtsp-net.com/english/index.html
01/09/2016
New Registry Published: Registro Pazienti DMD/BMD Italia
Registry Registro Pazienti DMD/BMD Italia from Italy was published an is now listed in the catalouge.
Registro Pazienti DMD/BMD Italia
Registry
--Maincontact--

30/08/2016
  Candidate Propose
Fernanda De Angelis proposed the Registry Registro Pazienti DMD/BMD Italia for Italy.
Fernanda De Angelis proposed the Registry Registro Pazienti DMD/BMD Italia for Italy.
Registro Pazienti DMD/BMD Italia ()
Registry
Contact: Fernanda De Angelis
Address:
URL: www.registrodmd.it
29/07/2016
  Candidate Propose
Corinne Bleyenheuft proposed the Registry Belgian Neuromuscular Disease Registry for Belgium.
Corinne Bleyenheuft proposed the Registry Belgian Neuromuscular Disease Registry for Belgium.
Belgian Neuromuscular Disease Registry (BNMDR)
Registry
Contact: Corinne Bleyenheuft
Address:
URL:
29/07/2016
New Biobank Published: BIOGEN - Genetic Biobank
Biobank BIOGEN - Genetic Biobank from Italy was published an is now listed in the catalouge.
BIOGEN - Genetic Biobank
Biobank
--Maincontact--

29/07/2016
New Biobank Published: Malta BioBank
Biobank Malta BioBank from Malta was published an is now listed in the catalouge.
Malta BioBank
Biobank
--Maincontact--

29/07/2016
New Biobank Published: Malta BioBank
Biobank Malta BioBank from Malta was published an is now listed in the catalouge.
Malta BioBank
Biobank
--Maincontact--

29/07/2016
New Biobank Published: Malta BioBank
Biobank Malta BioBank from Malta was published an is now listed in the catalouge.
Malta BioBank
Biobank
--Maincontact--

29/07/2016
New Biobank Published: Malta BioBank
Biobank Malta BioBank from Malta was published an is now listed in the catalouge.
Malta BioBank
Biobank
--Maincontact--

29/07/2016
New Biobank Published: Malta BioBank
Biobank Malta BioBank from Malta was published an is now listed in the catalouge.
Malta BioBank
Biobank
--Maincontact--

29/07/2016
New Biobank Published: Malta BioBank
Biobank Malta BioBank from Malta was published an is now listed in the catalouge.
Malta BioBank
Biobank
--Maincontact--

26/07/2016
New Registry Published: European Management Platform for Childhood Interstitial Lung Disease
Registry European Management Platform for Childhood Interstitial Lung Disease from all was published an is now listed in the catalouge.
European Management Platform for Childhood Interstitial Lung Disease
Registry
--Maincontact--

21/07/2016
  Candidate Propose
Matthias Griese proposed the Registry European Management Platform for Childhood Interstitial Lung Disease for all.
Matthias Griese proposed the Registry European Management Platform for Childhood Interstitial Lung Disease for all.
European Management Platform for Childhood Interstitial Lung Disease (chILD-EU)
Registry
Contact: Matthias Griese
Address:
URL: http://www.klinikum.uni-muenchen.de/Child-EU/en/index.html
13/07/2016
New Registry Published: Mark Little
Registry Mark Little from Ireland was published an is now listed in the catalouge.
Rare Kidney Disease Registry & BioResource
Registry
--Maincontact--

12/07/2016
[$logoleft$]Biobank requesed a pannel assessment: Malta BioBank[$logoright$]
Biobank Malta BioBank from Malta requesed a pannel assessment.
[$longtext$]
06/07/2016
New Registry Published: Cooperative European Paediatric Renal TransplAnt INitiative registry
Registry Cooperative European Paediatric Renal TransplAnt INitiative registry from all was published an is now listed in the catalouge.
Cooperative European Paediatric Renal TransplAnt INitiative registry
Registry
--Maincontact--

04/07/2016
New Registry Published: RDRF Test Registry
Registry RDRF Test Registry from Australia was published an is now listed in the catalouge.
RDRF Test Registry
Registry
--Maincontact--

04/07/2016
  Candidate Propose
Robert Reihs proposed the Registry RDRF Test Registry for Australia.
Robert Reihs proposed the Registry RDRF Test Registry for Australia.
RDRF Test Registry (RDRF)
Registry
Contact: Tamas Szabo
Address:
URL:
17/06/2016
New Registry Published: Global Prader-Willi Syndrome Registry
Registry Global Prader-Willi Syndrome Registry from United States was published an is now listed in the catalouge.
Global Prader-Willi Syndrome Registry
Registry
--Maincontact--

17/06/2016
  Candidate Propose
Yllka Kodra proposed the Registry Global Prader-Willi Syndrome Registry for United States.
Yllka Kodra proposed the Registry Global Prader-Willi Syndrome Registry for United States.
Global Prader-Willi Syndrome Registry ()
Registry
Contact: Jessica Bohonowych
Address:
URL: https://pwsregistry.org/
17/06/2016
New Registry Published: Rett Database Network
Registry Rett Database Network from Italy was published an is now listed in the catalouge.
Rett Database Network
Registry
--Maincontact--

15/06/2016
New Registry Published: UK LAM register
Registry UK LAM register from United Kingdom was published an is now listed in the catalouge.
UK LAM registry
Registry
--Maincontact--

15/06/2016
New Registry Published: SWCAR - South West congenital anomalies registry
Registry SWCAR - South West congenital anomalies registry from United Kingdom was published an is now listed in the catalouge.
SWCAR - South West congenital anomalies registry
Registry
--Maincontact--

19/05/2016
New Biobank Published: Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge
Biobank Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge from Italy was published an is now listed in the catalouge.
Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge
Biobank
--Maincontact--

19/05/2016
New Biobank Published: Cell line and DNA Bank of Genetic Movement Dis and Mitochondrial Dis - Besta Institute Milano, Italy
Biobank Cell line and DNA Bank of Genetic Movement Dis and Mitochondrial Dis - Besta Institute Milano, Italy from Italy was published an is now listed in the catalouge.
Cell line and DNA Bank of Genetic Movement Dis and Mitochondrial Dis - Besta Institute Milano, Italy
Biobank
--Maincontact--

19/05/2016
New Registry Published: European Cytogeneticists Association Register of Unbalanced Chromosome Aberrations
Registry European Cytogeneticists Association Register of Unbalanced Chromosome Aberrations from Netherlands was published an is now listed in the catalouge.
ECARUCA: European Cytogeneticists Association Register of Unbalanced Chromosome Aberrations
Registry
--Maincontact--

19/05/2016
New Registry Published: Mark Little
Registry Mark Little from Ireland was published an is now listed in the catalouge.
Rare Kidney Disease Registry and Biobank
Registry
--Maincontact--

19/05/2016
  Candidate Propose
asNavylk67mo proposed the Registry asNavylk67mo for Morocco.
asNavylk67mo proposed the Registry asNavylk67mo for Morocco.
asNavylk67mo ()
Registry
Contact: rodneymyles@hostingninja.top
Address: Tafraout
URL: http://cialis10mg.top
19/05/2016
  Candidate Propose
asNavytpssp8 proposed the Registry asNavytpssp8 for Morocco.
asNavytpssp8 proposed the Registry asNavytpssp8 for Morocco.
asNavytpssp8 ()
Registry
Contact: laura1rubio1abad1@free-mails.bid
Address: Tafraout
URL: http://cialis10mg.top
17/05/2016
  Candidate Propose
asNavy1yt0mk proposed the Registry asNavy1yt0mk for Morocco.
asNavy1yt0mk proposed the Registry asNavy1yt0mk for Morocco.
asNavy1yt0mk ()
Registry
Contact: manasart@besthostever.xyz
Address: Tafraout
URL: http://cialis10mg.top
17/05/2016
  Candidate Propose
asNavyyu426i proposed the Registry asNavyyu426i for Morocco.
asNavyyu426i proposed the Registry asNavyyu426i for Morocco.
asNavyyu426i ()
Registry
Contact: smileyreeves@mails-4-mails.bid
Address: Tafraout
URL: http://cialis10mg.top
17/05/2016
  Candidate Propose
En Kimura proposed the Registry Remudy for Japan.
En Kimura proposed the Registry Remudy for Japan.
Remudy ()
Registry
Contact: En Kimura
Address:
URL: http://www.remudy.jp
13/05/2016
[$logoleft$]Biobank requesed a pannel assessment: Biobank of blood, tissue and DNA samples of patients affected by Rare Skeletal Diseases[$logoright$]
Biobank Biobank of blood, tissue and DNA samples of patients affected by Rare Skeletal Diseases from Italy requesed a pannel assessment.
[$longtext$]
13/05/2016
[$logoleft$]Biobank requesed a pannel assessment: Cell line and DNA Bank of Genetic Movement Dis and Mitochondrial Dis - Besta Institute Milano, Italy[$logoright$]
Biobank Cell line and DNA Bank of Genetic Movement Dis and Mitochondrial Dis - Besta Institute Milano, Italy from Italy requesed a pannel assessment.
[$longtext$]
11/05/2016
  Candidate Propose
Yllka Kodra proposed the Registry European Cytogeneticists Association Register of Unbalanced Chromosome Aberrations for Netherlands.
Yllka Kodra proposed the Registry European Cytogeneticists Association Register of Unbalanced Chromosome Aberrations for Netherlands.
European Cytogeneticists Association Register of Unbalanced Chromosome Aberrations (ECARUCA)
Registry
Contact: Nicole DE LEEUW
Address: Geert Grooteplein-Zuid 10 6525 GA NIJMEGEN
URL: http://umcecaruca01.extern.umcn.nl:8080/ecaruca/ecaruca.jsp
11/05/2016
New Registry Published: COST Action BM1105 Patient Registry - GnRH Network
Registry COST Action BM1105 Patient Registry - GnRH Network from Switzerland was published an is now listed in the catalouge.
COST Action BM1105 Patient Registry - GnRH Network
Registry
--Maincontact--

11/05/2016
  Candidate Propose
Yllka Kodra proposed the Registry COST Action BM1105 Patient Registry - GnRH Network for Switzerland.
Yllka Kodra proposed the Registry COST Action BM1105 Patient Registry - GnRH Network for Switzerland.
COST Action BM1105 Patient Registry - GnRH Network ()
Registry
Contact: Andrew DWYER
Address:
URL: http://www.gnrhnetwork.eu/hhn_home/hhn-researchers/hhn-patientregistry.htm
11/05/2016
New Registry Published: CENTRAL DATA REGISTRY OF THE EUROPEAN COMPETENCE NETWORK ON MASTOCYTOSIS
Registry CENTRAL DATA REGISTRY OF THE EUROPEAN COMPETENCE NETWORK ON MASTOCYTOSIS from Austria was published an is now listed in the catalouge.
Central data registry of the European competence network on mastocytosis
Registry
--Maincontact--

11/05/2016
  Candidate Propose
Yllka Kodra proposed the Registry CENTRAL DATA REGISTRY OF THE EUROPEAN COMPETENCE NETWORK ON MASTOCYTOSIS for Austria.
Yllka Kodra proposed the Registry CENTRAL DATA REGISTRY OF THE EUROPEAN COMPETENCE NETWORK ON MASTOCYTOSIS for Austria.
CENTRAL DATA REGISTRY OF THE EUROPEAN COMPETENCE NETWORK ON MASTOCYTOSIS (ECNM)
Registry
Contact: Wolfgang SPERR
Address: Waehringer Guertel 18-20 1090 Vienna, Austria
URL: http://ecnm.net/homepage/index.php/component/content/article?id=105
11/05/2016
  Candidate Propose
asNavyaon7mg proposed the Registry asNavyaon7mg for Morocco.
asNavyaon7mg proposed the Registry asNavyaon7mg for Morocco.
asNavyaon7mg ()
Registry
Contact: afhotstud1133@email4everybody.bid
Address: Tafraout
URL: http://vardenafil-20mg.com
10/05/2016
New Biobank Published: Neuromuscular Bank of Tissues and DNA samples
Biobank Neuromuscular Bank of Tissues and DNA samples from Italy was published an is now listed in the catalouge.
Neuromuscular Bank of Tissues and DNA samples
Biobank
--Maincontact--

10/05/2016
New Biobank Published: Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation
Biobank Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation from Italy was published an is now listed in the catalouge.
Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation
Biobank
--Maincontact--

10/05/2016
New Biobank Published: Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation
Biobank Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation from Italy was published an is now listed in the catalouge.
Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation
Biobank
--Maincontact--

10/05/2016
[$logoleft$]Biobank requesed a pannel assessment: Neuromuscular Bank of Tissues and DNA samples[$logoright$]
Biobank Neuromuscular Bank of Tissues and DNA samples from Italy requesed a pannel assessment.
[$longtext$]
09/05/2016
[$logoleft$]Biobank requesed a pannel assessment: Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation[$logoright$]
Biobank Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation from Italy requesed a pannel assessment.
[$longtext$]
07/05/2016
  Candidate Propose
Lynda proposed the Biobank Lynda for Dominican Republic.
Lynda proposed the Biobank Lynda for Dominican Republic.
Lynda (m0VtK19aDS5s)
Biobank
Contact: qXl2MbglV
Address:
URL: http://rcmspdiivar.com
07/05/2016
  Candidate Propose
Liberty proposed the Biobank Liberty for Republic of Congo.
Liberty proposed the Biobank Liberty for Republic of Congo.
Liberty (Ga3X9ItFg)
Biobank
Contact: cn68f845Qk
Address:
URL: http://fxponzzvws.com
06/05/2016
New Registry Published: The global aHUS Registry
Registry The global aHUS Registry from France was published an is now listed in the catalouge.
The global aHUS Registry
Registry
--Maincontact--

06/05/2016
  Candidate Propose
Yllka Kodra proposed the Registry The global aHUS Registry for all.
Yllka Kodra proposed the Registry The global aHUS Registry for all.
The global aHUS Registry (aHUS Registry)
Registry
Contact: Véronique Frémeaux-Bacchi
Address: Assistance Publique-Hôpitaux de Paris, Hôpital Européen Georges Pompidou
URL: https://clinicaltrials.gov/ct2/show/NCT01522183
06/05/2016
  Candidate Propose
Yllka Kodra proposed the Registry The international ARPKD registry for Germany.
Yllka Kodra proposed the Registry The international ARPKD registry for Germany.
The international ARPKD registry (ARegPKD)
Registry
Contact: Max Christoph Liebau
Address:
URL: https://www.aregpkd.org/index.php?id=about_aregpkd
06/05/2016
  Candidate Propose
Tamber proposed the Biobank Tamber for Democratic Republic of Congo.
Tamber proposed the Biobank Tamber for Democratic Republic of Congo.
Tamber (XSPulBX8JE88)
Biobank
Contact: EeIMrWC5fJu
Address:
URL: http://noluodmr.com
05/05/2016
[$logoleft$]Biobank requesed a pannel assessment: Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge[$logoright$]
Biobank Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge from Italy requesed a pannel assessment.
[$longtext$]
02/05/2016
New Registry Published: FRENCH CYSTIC FIBROSIS REGISTRY
Registry FRENCH CYSTIC FIBROSIS REGISTRY from France was published an is now listed in the catalouge.
French Cystic Fibrosis Registry
Registry
--Maincontact--

02/05/2016
  Candidate Propose
LEMONNIER proposed the Registry FRENCH CYSTIC FIBROSIS REGISTRY for France.
LEMONNIER proposed the Registry FRENCH CYSTIC FIBROSIS REGISTRY for France.
FRENCH CYSTIC FIBROSIS REGISTRY ()
Registry
Contact: LEMONNIER LYDIE
Address: 181, rue de Tolbiac 75013 PARIS
URL: www.registredelamuco.org
29/04/2016
  Candidate Propose
Stella proposed the Registry Prader Willi Registry for Algeria.
Stella proposed the Registry Prader Willi Registry for Algeria.
Prader Willi Registry (Algerianregistry)
Registry
Contact: Stella
Address:
URL:
18/04/2016
New Biobank Published: Genomic and Genetic Disorders Biobank
Biobank Genomic and Genetic Disorders Biobank from Italy was published an is now listed in the catalouge.
Genomic and Genetic Disorders Biobank
Biobank
--Maincontact--

18/04/2016
New Biobank Published: Genomic and Genetic Disorders Biobank
Biobank Genomic and Genetic Disorders Biobank from Italy was published an is now listed in the catalouge.
Genomic and Genetic Disorders Biobank
Biobank
--Maincontact--

18/04/2016
[$logoleft$]Biobank requesed a pannel assessment: Genomic and Genetic Disorders Biobank[$logoright$]
Biobank Genomic and Genetic Disorders Biobank from Italy requesed a pannel assessment.
[$longtext$]
18/04/2016
  Candidate Propose
Giuseppe Merla proposed the Biobank Genomic and Genetic Disorders Biobank for Italy.
Giuseppe Merla proposed the Biobank Genomic and Genetic Disorders Biobank for Italy.
Genomic and Genetic Disorders Biobank (GGDB)
Biobank
Contact: GIUSEPPE MERLA
Address: viale cappuccini
URL: http://www.operapadrepio.it/ggdbbank/
12/04/2016
[$logoleft$]Biobank requesed a pannel assessment: RD Biobank[$logoright$]
Biobank RD Biobank from Italy requesed a pannel assessment.
[$longtext$]
11/04/2016
  Candidate Propose
Stacy Cossette proposed the Biobank Congenital Muscle Disease Tissue Repository for United States.
Stacy Cossette proposed the Biobank Congenital Muscle Disease Tissue Repository for United States.
Congenital Muscle Disease Tissue Repository (CMD-TR)
Biobank
Contact: Stacy Cossette
Address: 8701 Watertown Plank Road, Milwaukee, WI 53226
URL: mcw.edu/cmdtr
08/04/2016
  Candidate Propose
Rachel Alvarez proposed the Registry Congenital Muscle Disease International Registry for all.
Rachel Alvarez proposed the Registry Congenital Muscle Disease International Registry for all.
Congenital Muscle Disease International Registry (CMDIR)
Registry
Contact: Rachel Alvarez
Address: 19401 S. Vermont Ave., Suite J100, Torrance, CA 90502 USA
URL: www.cmdir.org
05/04/2016
New Registry Published: Myotubular and Centronuclear Myopathy Patient Registry
Registry Myotubular and Centronuclear Myopathy Patient Registry from United Kingdom was published an is now listed in the catalouge.
Myotubular and Centronuclear Myopathy Patient Registry
Registry
--Maincontact--

31/03/2016
  Candidate Propose
Joanne Bullivant proposed the Registry Myotubular and Centronuclear Myopathy Patient Registry for United Kingdom.
Joanne Bullivant proposed the Registry Myotubular and Centronuclear Myopathy Patient Registry for United Kingdom.
Myotubular and Centronuclear Myopathy Patient Registry (MTM)
Registry
Contact: Joanne Bullivant
Address: John Walton Muscular Dystrophy Research Centre, Newcastle University, Centre for Life, Newcastle upon Tyne, NE1 3BZ
URL:
22/03/2016
[$logoleft$]Biobank requesed a pannel assessment: NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA[$logoright$]
Biobank NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA from Slovenia requesed a pannel assessment.
[$longtext$]
11/03/2016
New Biobank Published: Biobank of skeletal muscle, peripheral nerve, DNA and cell cultures
Biobank Biobank of skeletal muscle, peripheral nerve, DNA and cell cultures from Italy was published an is now listed in the catalouge.
Biobank of skeletal muscle, peripheral nerve, DNA and cell cultures
Biobank
--Maincontact--

10/03/2016
[$logoleft$]Biobank requesed a pannel assessment: Biobank of skeletal muscle, peripheral nerve, DNA and cell cultures[$logoright$]
Biobank Biobank of skeletal muscle, peripheral nerve, DNA and cell cultures from Italy requesed a pannel assessment.
[$longtext$]
09/03/2016
New Biobank Published: Parkinson Institute Biobank
Biobank Parkinson Institute Biobank from Italy was published an is now listed in the catalouge.
Parkinson Institute Biobank
Biobank
--Maincontact--

09/03/2016
New Biobank Published: Parkinson Institute Biobank
Biobank Parkinson Institute Biobank from Italy was published an is now listed in the catalouge.
Parkinson Institute Biobank
Biobank
--Maincontact--

07/03/2016
[$logoleft$]Data Updated: [url organization 41081]Austrian Test Biobank WP3[urlend][$logoright$]
[url organization 41081]Austrian Test Biobank WP3[urlend] updated the fields in bb_core
[$longtext$]
04/03/2016
[$logoleft$]Biobank requesed a pannel assessment: Parkinson Institute Biobank[$logoright$]
Biobank Parkinson Institute Biobank from Italy requesed a pannel assessment.
[$longtext$]
04/03/2016
New Biobank Published: Hacettepe Rare Diseases Biobank
Biobank Hacettepe Rare Diseases Biobank from Turkey was published an is now in the list redy for the pannel assessment invitation.
Hacettepe DNA/Cell Bank for Rare Diseases
Biobank
--Maincontact--

04/03/2016
  Candidate Propose
Mary Wang proposed the Biobank Hacettepe Rare Diseases Biobank for Turkey.
Mary Wang proposed the Biobank Hacettepe Rare Diseases Biobank for Turkey.
Hacettepe Rare Diseases Biobank ()
Biobank
Contact: Meral Ozguc
Address: Sıhhiye, Ankara
URL:
04/03/2016
New Biobank Published: Biorepsitory of tissue and blood samples, lymphocytes and DNA from patients affected by solitary/mul
Biobank Biorepsitory of tissue and blood samples, lymphocytes and DNA from patients affected by solitary/mul from Italy was published an is now in the list redy for the pannel assessment invitation.
BIOGEN - Genetic Biobank
Biobank
--Maincontact--

26/02/2016
New Biobank Published: Human DNA and cell biobank of Genethon - genetic diseases, mainly neuromuscular diseases - part of t
Biobank Human DNA and cell biobank of Genethon - genetic diseases, mainly neuromuscular diseases - part of t from France was published an is now in the list redy for the pannel assessment invitation.
Human DNA and cell biobank of Genethon - genetic diseases, mainly neuromuscular diseases - part of t
Biobank
--Maincontact--

26/02/2016
New Biobank Published: NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA
Biobank NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA from Slovenia was published an is now in the list redy for the pannel assessment invitation.
NEUROMUSCULAR TISSUE BANK UNIVERSITY OF LJUBLJANA
Biobank
--Maincontact--

26/02/2016
New Biobank Published: National Laboratory for the Genetics of Israeli Populations
Biobank National Laboratory for the Genetics of Israeli Populations from Israel was published an is now in the list redy for the pannel assessment invitation.
National Laboratory for the Genetics of Israeli Populations
Biobank
--Maincontact--

26/02/2016
New Biobank Published: DNA biobank of the Department of Molecular Genetics and Diagnostics, National Institute of Environme
Biobank DNA biobank of the Department of Molecular Genetics and Diagnostics, National Institute of Environme from Hungary was published an is now in the list redy for the pannel assessment invitation.
DNA biobank of the Department of Molecular Genetics and Diagnostics, National Institute of Environme
Biobank
--Maincontact--

26/02/2016
New Biobank Published: MTCC (Muscle Tissue Culture Collection), Friedrich-Baur-Institute, Department of Neurology, Universi
Biobank MTCC (Muscle Tissue Culture Collection), Friedrich-Baur-Institute, Department of Neurology, Universi from Germany was published an is now in the list redy for the pannel assessment invitation.
MTCC (Muscle Tissue Culture Collection), Friedrich-Baur-Institute, Department of Neurology, Universi
Biobank
--Maincontact--

26/02/2016
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank London
Biobank MRC Centre for Neuromuscular Diseases BioBank London from United Kingdom was published an is now in the list redy for the pannel assessment invitation.
MRC Centre for Neuromuscular Diseases BioBank London
Biobank
--Maincontact--

26/02/2016
New Biobank Published: Myobank-AFM : the tissue bank of the Myology Institute
Biobank Myobank-AFM : the tissue bank of the Myology Institute from France was published an is now in the list redy for the pannel assessment invitation.
Myobank-AFM : the tissue bank of the Myology Institute
Biobank
--Maincontact--

26/02/2016
New Biobank Published: Quebec Myotonic Dystrophy Biocatalog
Biobank Quebec Myotonic Dystrophy Biocatalog from Canada was published an is now in the list redy for the pannel assessment invitation.
Quebec Myotonic Dystrophy Biocatalog
Biobank
--Maincontact--

26/02/2016
  Candidate Propose
Danila Seidel proposed the Registry FungiScope - Global Emerging Fungal Infection Registry for all.
Danila Seidel proposed the Registry FungiScope - Global Emerging Fungal Infection Registry for all.
FungiScope - Global Emerging Fungal Infection Registry (FungiScope - Global Emerging Fungal Infection Registry)
Registry
Contact: Dr. Danila Seidel
Address: Herderstrasse 52-54
URL: www.fungiscope.net
22/02/2016
New Registry Published: EURO-WABB Project
Registry EURO-WABB Project from Europe was published an is now listed in the catalouge.
EURO-WABB: Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome
Registry
--Maincontact--

19/02/2016
New Registry Published: Rare disease registry for Workshop EXAMPLE
Registry Rare disease registry for Workshop EXAMPLE from Italy was published an is now listed in the catalouge.
Rare disease biobank and registry EXAMPLE
Registry
--Maincontact--

19/02/2016
  Candidate Propose
Federico proposed the Registry Rare disease registry for Workshop EXAMPLE for Italy.
Federico proposed the Registry Rare disease registry for Workshop EXAMPLE for Italy.
Rare disease registry for Workshop EXAMPLE (RDRfW)
Registry
Contact: Federico
Address:
URL:
19/02/2016
New Registry Published: Le Régistre Algérien des Malades Neuromusculaires (RAMN)​
Registry Le Régistre Algérien des Malades Neuromusculaires (RAMN)​ from Algeria was published an is now listed in the catalouge.
Le Régistre Algérien des Malades Neuromusculaires (RAMN)​
Registry
--Maincontact--

16/02/2016
New Registry Published: Ukrainian Registry for Spinal Muscular Atrophy
Registry Ukrainian Registry for Spinal Muscular Atrophy from Ukraine was published an is now listed in the catalouge.
Ukrainian Registry for Spinal Muscular Atrophy
Registry
--Maincontact--

15/02/2016
New Biobank Published: RD Biobank
Biobank RD Biobank from Italy was published an is now in the list redy for the pannel assessment invitation.
RD Biobank
Biobank
--Maincontact--

15/02/2016
  Candidate Propose
Mary Wang proposed the Biobank RD Biobank for Italy.
Mary Wang proposed the Biobank RD Biobank for Italy.
RD Biobank (Demo2016)
Biobank
Contact: Mary Wang
Address:
URL:
13/02/2016
  Candidate Propose
Vitaliy Matyushenko proposed the Registry Ukrainian Registry for Spinal Muscular Atrophy for Ukraine.
Vitaliy Matyushenko proposed the Registry Ukrainian Registry for Spinal Muscular Atrophy for Ukraine.
Ukrainian Registry for Spinal Muscular Atrophy (CSMA)
Registry
Contact: Vitaliy Matyushenko
Address: Gogolia street 7, Kharkiv, 61057
URL: http://csma.org.ua:8080/
10/02/2016
New Registry Published: Belgian familial adenomatous polyposis registry
Registry Belgian familial adenomatous polyposis registry from Belgium was published an is now listed in the catalouge.
Belgian familial adenomatous polyposis registry
Registry
--Maincontact--

09/02/2016
New Registry Published: NBIA Patient Registry and Biomaterial Bank (TIRCON)
Registry NBIA Patient Registry and Biomaterial Bank (TIRCON) from all was published an is now listed in the catalouge.
NBIA Patient Registry (TIRCON)
Registry
--Maincontact--

09/02/2016
  Candidate Propose
Heike Jaskolka proposed the Registry NBIA Patient Registry and Biomaterial Bank (TIRCON) for all.
Heike Jaskolka proposed the Registry NBIA Patient Registry and Biomaterial Bank (TIRCON) for all.
NBIA Patient Registry and Biomaterial Bank (TIRCON) (NBIA)
Registry
Contact: Dr. Boriana Büchner
Address: Klinikum der Universität München, Friedrich-Baur-Institute at the Department of Neurology, Munich/ Germany
URL: www.tirconregistry.org/tircon_idat/jsp/core/login.jsf
17/01/2016
  Candidate Propose
Bouras Abdelkader proposed the Registry Registre Algérien des Malades Neuromusculaires for Algeria.
Bouras Abdelkader proposed the Registry Registre Algérien des Malades Neuromusculaires for Algeria.
Registre Algérien des Malades Neuromusculaires (RAMN)
Registry
Contact: Dr Bouras Abdelkader
Address: 05,street yousfi mohamed,sidi m'hamed
URL:
15/01/2016
New Registry Published: Shwachman-Diamond Syndrome Registry
Registry Shwachman-Diamond Syndrome Registry from United States was published an is now listed in the catalouge.
Shwachman-Diamond Syndrome Registry
Registry
--Maincontact--

15/01/2016
New Registry Published: Registre français de l'hypertension artérielle pulmonaire (HTAP)
Registry Registre français de l'hypertension artérielle pulmonaire (HTAP) from France was published an is now listed in the catalouge.
French registry of rare pulmonary hypertension (HTAP)
Registry
--Maincontact--

15/01/2016
New Registry Published: The Austrian Myeloma Registry (AMR)
Registry The Austrian Myeloma Registry (AMR) from Austria was published an is now listed in the catalouge.
Austrian Myeloma Registry (AMR)
Registry
--Maincontact--

15/01/2016
New Registry Published: Belarus severe chronic neutropenia patient registry
Registry Belarus severe chronic neutropenia patient registry from Belarus was published an is now listed in the catalouge.
Belarus severe chronic neutropenia patient registry
Registry
--Maincontact--

15/01/2016
New Registry Published: PedNet Haemophilia Registry
Registry PedNet Haemophilia Registry from all was published an is now listed in the catalouge.
PedNet Haemophilia Registry
Registry
--Maincontact--

14/01/2016
  Candidate Propose
Jaana lähdetie proposed the Registry Finnish TREAT-NMD Patient Registry for Finland.
Jaana lähdetie proposed the Registry Finnish TREAT-NMD Patient Registry for Finland.
Finnish TREAT-NMD Patient Registry (Suomen Lihastautirekisteri)
Registry
Contact: Jaana Lahdetie
Address: Turku Univ. Central Hospital TO8 LSNEU,. P.B.52, 210521 TURKU
URL: http://www.lihastautiliitto.fi/cgi-bin/wafnet3.pl?id=547&kid=1
12/01/2016
  Candidate Propose
M. Estela Rubio-Gozalbo proposed the Registry M. Estela Rubio-Gozalbo for Netherlands.
M. Estela Rubio-Gozalbo proposed the Registry M. Estela Rubio-Gozalbo for Netherlands.
M. Estela Rubio-Gozalbo (GalNet)
Registry
Contact: Ana I. Coelho
Address:
URL:
15/12/2015
New Registry Published: GNEM Disease Monitoring Program (GNEM-DMP)
Registry GNEM Disease Monitoring Program (GNEM-DMP) from United Kingdom was published an is now listed in the catalouge.
GNE Myopathy Disease Monitoring Program (GNEM-DMP)
Registry
--Maincontact--

03/12/2015
  Candidate Propose
Phillip Cammish proposed the Registry GNEM Disease Monitoring Program (GNEM-DMP) for United Kingdom.
Phillip Cammish proposed the Registry GNEM Disease Monitoring Program (GNEM-DMP) for United Kingdom.
GNEM Disease Monitoring Program (GNEM-DMP) ()
Registry
Contact: Phillip Cammish
Address:
URL: https://www.gnem-dmp.com/
09/11/2015
  Candidate Propose
Mark Little proposed the Biobank/Registry Mark Little for Ireland.
Mark Little proposed the Biobank/Registry Mark Little for Ireland.
Mark Little (RKD)
Biobank/Registry
Contact: Alan Kennedy
Address: Trinity Health Kidney Centre, Tallaght Hospital, Dublin 24
URL: http://www.medicine.tcd.ie/thkc/research/RKD-Registry-Biobank.php
09/11/2015
  Candidate Propose
Danila Seidel proposed the Registry Fungiscope - Global emerging fungal infection registry for Germany.
Danila Seidel proposed the Registry Fungiscope - Global emerging fungal infection registry for Germany.
Fungiscope - Global emerging fungal infection registry (FS)
Registry
Contact: Prof. Oliver Cornely
Address: Kerpenerstr. 62
URL: http://www.fungiscope.net/
30/10/2015
New Registry Published: British Isles Network of Congenital Anomaly Registers
Registry British Isles Network of Congenital Anomaly Registers from United Kingdom was published an is now listed in the catalouge.
British Isles Network of Congenital Anomaly Registers
Registry
--Maincontact--

30/10/2015
New Registry Published: National Register of Congenital Malformations 
Registry National Register of Congenital Malformations  from Czech Republic was published an is now listed in the catalouge.
National Register of Congenital Malformations 
Registry
--Maincontact--

29/10/2015
New Registry Published: Niemann-Pick C clinical database
Registry Niemann-Pick C clinical database from Germany was published an is now listed in the catalouge.
Niemann-Pick C clinical database
Registry
--Maincontact--

29/10/2015
  Candidate Propose
Paola Torreri proposed the Registry Niemann-Pick C clinical database for Germany.
Paola Torreri proposed the Registry Niemann-Pick C clinical database for Germany.
Niemann-Pick C clinical database ()
Registry
Contact: Miriam Stampfer
Address:
URL: http://www.ojrd.com/content/8/1/35
29/10/2015
New Registry Published: The International Niemann Pick Disease Registry
Registry The International Niemann Pick Disease Registry from all was published an is now listed in the catalouge.
The International Niemann Pick Disease Registry
Registry
--Maincontact--

29/10/2015
  Candidate Propose
Paola Torreri proposed the Registry The International Niemann Pick Disease Registry for all.
Paola Torreri proposed the Registry The International Niemann Pick Disease Registry for all.
The International Niemann Pick Disease Registry ()
Registry
Contact: Tarekegn Geberhiwot
Address:
URL: https://www.inpdr.org/
28/10/2015
New Registry Published: Finnish patient registry on Fabry disease
Registry Finnish patient registry on Fabry disease from Finland was published an is now listed in the catalouge.
Finnish patient registry on Fabry disease
Registry
--Maincontact--

28/10/2015
New Registry Published: The International Collaborative Gaucher Group -Gaucher registry
Registry The International Collaborative Gaucher Group -Gaucher registry from all was published an is now listed in the catalouge.
Registry NXT - Genzyme's Rare Disease Registries
Registry
--Maincontact--

21/10/2015
  Candidate Propose
Danila Seidel proposed the Biobank/Registry FungiScope - Global emerging fungal infection registry for Germany.
Danila Seidel proposed the Biobank/Registry FungiScope - Global emerging fungal infection registry for Germany.
FungiScope - Global emerging fungal infection registry ()
Biobank/Registry
Contact: Prof. Oliver A. Cornely
Address: Herderstrasse 52-54
URL: www.fungiscope.net
21/10/2015
New Registry Published: RaDiCo-MPS
Registry RaDiCo-MPS from France was published an is now listed in the catalouge.
RaDiCo-MPS - French national cohort on mucopolysaccharidosis in the era of specific therapeutics.
Registry
--Maincontact--

21/10/2015
New Registry Published: RaDiCo-AC-ŒIL
Registry RaDiCo-AC-ŒIL from France was published an is now listed in the catalouge.
RaDiCo-AC-ŒIL - French national cohort on congenital defects of the eye
Registry
--Maincontact--

21/10/2015
New Registry Published: RaDiCo-IDMet
Registry RaDiCo-IDMet from France was published an is now listed in the catalouge.
RaDiCo-IDMet - French and European cohort on Imprinting Disorders and Metabolism Future.
Registry
--Maincontact--

21/10/2015
New Registry Published: RaDiCo-GenIDA
Registry RaDiCo-GenIDA from France was published an is now listed in the catalouge.
RaDiCo-GenIDA - Social network on rare monogenic forms of intellectual disabilities
Registry
--Maincontact--

21/10/2015
New Registry Published: RaDiCo-FARD
Registry RaDiCo-FARD from France was published an is now listed in the catalouge.
RaDiCo-FARD - French national cohort on the individual burden in the course of rare skin diseases
Registry
--Maincontact--

21/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo-IDMet for France.
Paola Torreri proposed the Registry RaDiCo-IDMet for France.
RaDiCo-IDMet ()
Registry
Contact: Jerome Weinbach
Address:
URL: http://www.radico.fr/en/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/146-radico-idmet
21/10/2015
  Candidate Propose
Paola Torreri proposed the Biobank RaDiCo-MPS for France.
Paola Torreri proposed the Biobank RaDiCo-MPS for France.
RaDiCo-MPS ()
Biobank
Contact: Jerome Weinbach
Address:
URL: http://www.radico.fr/en/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/153-radico-mps
21/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo-GenIDA for France.
Paola Torreri proposed the Registry RaDiCo-GenIDA for France.
RaDiCo-GenIDA ()
Registry
Contact: Jerome Weinbach
Address:
URL: http://www.radico.fr/en/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/144-radico-genida
21/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo-FARD for France.
Paola Torreri proposed the Registry RaDiCo-FARD for France.
RaDiCo-FARD ()
Registry
Contact: Jerome Weinbach
Address:
URL: http://www.radico.fr/en/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/151-radico-fard
21/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo-AC-ŒIL for France.
Paola Torreri proposed the Registry RaDiCo-AC-ŒIL for France.
RaDiCo-AC-ŒIL ()
Registry
Contact: Jerome Weinbach
Address:
URL: http://www.radico.fr/en/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/139-cohorte-radico-ac-oeil
16/10/2015
New Registry Published: The National Alpha-1 Antitrypsin Deficiency Registry
Registry The National Alpha-1 Antitrypsin Deficiency Registry from Ireland was published an is now listed in the catalouge.
Alpha One Foundation Registry
Registry
--Maincontact--

16/10/2015
  Candidate Propose
Paola Torreri proposed the Registry Alpha One Foundation Registry for Ireland.
Paola Torreri proposed the Registry Alpha One Foundation Registry for Ireland.
Alpha One Foundation Registry ()
Registry
Contact: info
Address:
URL: http://www.hiqa.ie/healthcare/health-information/data-collections/online-catalogue/alpha-one-foundation-registry
16/10/2015
New Registry Published: Australian Bleeding Disorders Registry (ABDR)
Registry Australian Bleeding Disorders Registry (ABDR) from Australia was published an is now listed in the catalouge.
Australian Bleeding Disorders Registry (ABDR)
Registry
--Maincontact--

16/10/2015
  Candidate Propose
Paola Torreri proposed the Registry Australian Bleeding Disorders Registry (ABDR) for Australia.
Paola Torreri proposed the Registry Australian Bleeding Disorders Registry (ABDR) for Australia.
Australian Bleeding Disorders Registry (ABDR) ()
Registry
Contact: Dr John Rowell
Address:
URL: http://www.blood.gov.au/abdr
16/10/2015
New Registry Published: National Haemophilia Register (Clintech)
Registry National Haemophilia Register (Clintech) from Ireland was published an is now listed in the catalouge.
National Haemophilia Register (Clintech)
Registry
--Maincontact--

16/10/2015
  Candidate Propose
Paola Torreri proposed the Registry National Haemophilia Register (Clintech) for Ireland.
Paola Torreri proposed the Registry National Haemophilia Register (Clintech) for Ireland.
National Haemophilia Register (Clintech) ()
Registry
Contact: Dr. Barry White
Address:
URL: http://www.hiqa.ie/resource-centre/professionals/health-information-sources/national-haemophilia-register
15/10/2015
New Registry Published: NHD- National Haemophilia Database / United Kingdom Haemophilia Centre Doctors' Organisation UKHCDO
Registry NHD- National Haemophilia Database / United Kingdom Haemophilia Centre Doctors' Organisation UKHCDO from United Kingdom was published an is now listed in the catalouge.
NHD- National Haemophilia Database
Registry
--Maincontact--

15/10/2015
New Registry Published: Serbian registry of hemophilia and von Willebrand disease patients
Registry Serbian registry of hemophilia and von Willebrand disease patients from Serbia was published an is now listed in the catalouge.
Serbian registry of hemophilia and von Willebrand disease
Registry
--Maincontact--

15/10/2015
New Registry Published: German Haemophilia Registry (DHR)
Registry German Haemophilia Registry (DHR) from Germany was published an is now listed in the catalouge.
German Haemophilia Registry (DHR)
Registry
--Maincontact--

15/10/2015
New Registry Published: FranceCoag: French prospective cohort of patients affected with haemophilia or severe form of other
Registry FranceCoag: French prospective cohort of patients affected with haemophilia or severe form of other from France was published an is now listed in the catalouge.
FranceCoag: French cohort of patients suffering from hereditary coagulation disorders
Registry
--Maincontact--

15/10/2015
New Registry Published: Czech National Programme for Haemophilia
Registry Czech National Programme for Haemophilia from Czech Republic was published an is now listed in the catalouge.
Czech National Programme for Haemophilia
Registry
--Maincontact--

15/10/2015
New Registry Published: Austrian Haemophilia Registry
Registry Austrian Haemophilia Registry from Austria was published an is now listed in the catalouge.
Austrian Haemophilia Registry
Registry
--Maincontact--

14/10/2015
New Registry Published: SCNIR Europe
Registry SCNIR Europe from Europe was published an is now listed in the catalouge.
Severe Chronic Neutropenia International Registry
Registry
--Maincontact--

14/10/2015
New Registry Published: EUROWILSON: European clinical database for Wilson disease
Registry EUROWILSON: European clinical database for Wilson disease from France was published an is now listed in the catalouge.
EUROWILSON: European clinical database for Wilson disease
Registry
--Maincontact--

08/10/2015
New Registry Published: German alpha-1 antitrypsin deficiency registry
Registry German alpha-1 antitrypsin deficiency registry from Germany was published an is now listed in the catalouge.
German alpha-1 antitrypsin deficiency registry
Registry
--Maincontact--

08/10/2015
New Registry Published: Ataxia-Telangiectasia patient registry
Registry Ataxia-Telangiectasia patient registry from Germany was published an is now listed in the catalouge.
Ataxia-Telangiectasia patient registry
Registry
--Maincontact--

08/10/2015
New Registry Published: CoF-AT study: a French cohort on ataxia-telangiectasia
Registry CoF-AT study: a French cohort on ataxia-telangiectasia from France was published an is now listed in the catalouge.
CoF-AT study: a French cohort on ataxia-telangiectasia
Registry
--Maincontact--

08/10/2015
New Registry Published: Alport Syndrome Treatments and Outcomes Registry
Registry Alport Syndrome Treatments and Outcomes Registry from United States was published an is now listed in the catalouge.
Alport Syndrome Treatments and Outcomes Registry
Registry
--Maincontact--

08/10/2015
  Candidate Propose
Paola Torreri proposed the Registry Alport Syndrome Treatments and Outcomes Registry for United States.
Paola Torreri proposed the Registry Alport Syndrome Treatments and Outcomes Registry for United States.
Alport Syndrome Treatments and Outcomes Registry ()
Registry
Contact: Clifford Kashtan
Address:
URL: http://www.alportregistry.org/
07/10/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now listed in the catalouge.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

07/10/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now listed in the catalouge.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

07/10/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now listed in the catalouge.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

07/10/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now listed in the catalouge.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

07/10/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now listed in the catalouge.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

07/10/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now listed in the catalouge.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

07/10/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now listed in the catalouge.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

07/10/2015
  Candidate Propose
Robert Reihs proposed the Registry TestRegistryAustria for Austria.
Robert Reihs proposed the Registry TestRegistryAustria for Austria.
TestRegistryAustria ()
Registry
Contact: Robert Reihs
Address:
URL:
07/10/2015
[$logoleft$]Biobank requesed a pannel assessment: MRC Centre for Neuromuscular Diseases BioBank Newcastle[$logoright$]
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom requesed a pannel assessment.
[$longtext$]
07/10/2015
New Registry Published: RaDiCo - EURBIO-Alport
Registry RaDiCo - EURBIO-Alport from France was published an is now listed in the catalouge.
RaDiCo-EURBIO-Alport - European cohort on Alport Syndrome
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - SED-VASC
Registry RaDiCo - SED-VASC from France was published an is now listed in the catalouge.
RaDiCo-SED-VASC - French national cohort on the vascular Ehlers-Danlos syndrome
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - RETICO
Registry RaDiCo - RETICO from France was published an is now listed in the catalouge.
RaDiCo-RETICO - French national Cohort on hereditary retinal dystrophies
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - RESPI
Registry RaDiCo - RESPI from France was published an is now listed in the catalouge.
RaDiCo-PID - French national cohort on Idiopathic Interstitial Pneumonia: from infancy to elderly.
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - PP
Registry RaDiCo - PP from France was published an is now listed in the catalouge.
RaDiCo-PP - French cohort for clinical, genetic and socio-economic study of Periodic Paralysis
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - MARFAN
Registry RaDiCo - MARFAN from France was published an is now listed in the catalouge.
RaDiCo-MARFAN - French national cohort on Marfan syndrome
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - ECYSCO
Registry RaDiCo - ECYSCO from France was published an is now listed in the catalouge.
RaDiCo-ECYSCO - European Cystinosis Cohort
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - DCP
Registry RaDiCo - DCP from France was published an is now listed in the catalouge.
RaDiCo-PCD - French national cohort on Primary Ciliary Dyskinesia
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - COLPAC
Registry RaDiCo - COLPAC from France was published an is now listed in the catalouge.
RaDiCo-COLPAC - French national cohort on Low Phospholipid-Associated Cholelithiasis syndrome
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - COBBALT
Registry RaDiCo - COBBALT from France was published an is now listed in the catalouge.
RaDiCo-COBBALT - French national nohort on Bardet-Biedl and Alström syndromes
Registry
--Maincontact--

07/10/2015
New Registry Published: RaDiCo - ACOStill
Registry RaDiCo - ACOStill from France was published an is now listed in the catalouge.
RaDiCo-ACOStill - The French Adult and Childhood Onset Still Disease Cohort
Registry
--Maincontact--

07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - SED-VASC for France.
Paola Torreri proposed the Registry RaDiCo - SED-VASC for France.
RaDiCo - SED-VASC ()
Registry
Contact: Xavier Jeunemaître
Address:
URL: http://www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/155-radico-sed-vasc
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - RETICO for France.
Paola Torreri proposed the Registry RaDiCo - RETICO for France.
RaDiCo - RETICO ()
Registry
Contact: Hélène Dollfus
Address:
URL: http://www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/154-radico-retico
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - RESPI for France.
Paola Torreri proposed the Registry RaDiCo - RESPI for France.
RaDiCo - RESPI ()
Registry
Contact: Annick Clement
Address:
URL: http://www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/149-radico-respi
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - PP for France.
Paola Torreri proposed the Registry RaDiCo - PP for France.
RaDiCo - PP ()
Registry
Contact: Savine Vicart
Address:
URL: http://www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/148-cohorte-radico-pp
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - DCP for France.
Paola Torreri proposed the Registry RaDiCo - DCP for France.
RaDiCo - DCP ()
Registry
Contact: Estelle Escudier
Address:
URL: http://www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/148-cohorte-radico-pp
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - MPS for France.
Paola Torreri proposed the Registry RaDiCo - MPS for France.
RaDiCo - MPS ()
Registry
Contact: Bénédicte Héron
Address:
URL: http://www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/153-radico-mps
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - MARFAN for France.
Paola Torreri proposed the Registry RaDiCo - MARFAN for France.
RaDiCo - MARFAN ()
Registry
Contact: Guillaume Jondeau
Address:
URL:
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - EURBIO-Alport for France.
Paola Torreri proposed the Registry RaDiCo - EURBIO-Alport for France.
RaDiCo - EURBIO-Alport ()
Registry
Contact: Laurence Heidet, Bertrand Knebelmann
Address:
URL:
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - ECYSCO for France.
Paola Torreri proposed the Registry RaDiCo - ECYSCO for France.
RaDiCo - ECYSCO ()
Registry
Contact: Aude Servais
Address:
URL:
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - COLPAC for France.
Paola Torreri proposed the Registry RaDiCo - COLPAC for France.
RaDiCo - COLPAC ()
Registry
Contact: Christophe Corpechot
Address:
URL:
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - COBBALT for France.
Paola Torreri proposed the Registry RaDiCo - COBBALT for France.
RaDiCo - COBBALT ()
Registry
Contact: Hélène Dollfus
Address:
URL:
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry RaDiCo - ACOStill for France.
Paola Torreri proposed the Registry RaDiCo - ACOStill for France.
RaDiCo - ACOStill ()
Registry
Contact: Sophie Georgin Lavialle
Address:
URL:
07/10/2015
  Candidate Propose
Paola Torreri proposed the Registry Cohorte RaDiCo-AC-OEIL for France.
Paola Torreri proposed the Registry Cohorte RaDiCo-AC-OEIL for France.
Cohorte RaDiCo-AC-OEIL (RaDiCo-AC-OEIL)
Registry
Contact: Patrick Calvas, Nicolas Chassaing
Address:
URL:
23/09/2015
  Candidate Propose
Anthonyjete proposed the Biobank Anthonyjete for all.
Anthonyjete proposed the Biobank Anthonyjete for all.
Anthonyjete ()
Biobank
Contact: lusyenab@mailexchange.ga
Address: Mariupol
URL: http://cheapzithromax.science
21/09/2015
  Candidate Propose
Anthonyjete proposed the Biobank Anthonyjete for all.
Anthonyjete proposed the Biobank Anthonyjete for all.
Anthonyjete ()
Biobank
Contact: lusyenab@mailexchange.ga
Address: Mariupol
URL: http://cheapzithromax.science
12/09/2015
  Candidate Propose
xxxshowslive.ml, proposed the Registry xxxshowslive.ml, for Japan.
xxxshowslive.ml, proposed the Registry xxxshowslive.ml, for Japan.
xxxshowslive.ml, (DedgCQXirSOmWWM)
Registry
Contact: USEoYItnKRDQlK
Address: TGCBaGyzDDw
URL: http://xxxshowslive.ml/#4876
11/09/2015
New Biobank Published: Galliera Genetic Bank
Biobank Galliera Genetic Bank from Italy was published an is now listed in the catalouge.
Galliera Genetic Bank
Biobank
--Maincontact--

11/09/2015
New Biobank Published: Galliera Genetic Bank
Biobank Galliera Genetic Bank from Italy was published an is now listed in the catalouge.
Galliera Genetic Bank
Biobank
--Maincontact--

11/09/2015
New Biobank Published: Galliera Genetic Bank
Biobank Galliera Genetic Bank from Italy was published an is now listed in the catalouge.
Galliera Genetic Bank
Biobank
--Maincontact--

11/09/2015
[$logoleft$]Biobank requesed a pannel assessment: Galliera Genetic Bank[$logoright$]
Biobank Galliera Genetic Bank from Italy requesed a pannel assessment.
[$longtext$]
20/07/2015
New Registry Published: UPA! Duchenne Registry
Registry UPA! Duchenne Registry from Mexico was published an is now listed in the catalouge.
UPA! Duchenne Registry
Registry
--Maincontact--

17/07/2015
  Candidate Propose
Joanna Vella proposed the Biobank Malta BioBank for Malta.
Joanna Vella proposed the Biobank Malta BioBank for Malta.
Malta BioBank (BBMRI.mt)
Biobank
Contact: Joanna Vella
Address: Malta Biobank, Laboratory of Molecular Genetics, Department of Physiology and Biochemistry, Biomedical Sciences Building, University of Malta, MSD 2080
URL: http://www.um.edu.mt/biobank/
15/07/2015
New Registry Published: German registry of congenital dyserythropoietic anemias (CDA)
Registry German registry of congenital dyserythropoietic anemias (CDA) from Germany was published an is now listed in the catalouge.
German registry of congenital dyserythropoietic anemias (CDA)
Registry
--Maincontact--

25/06/2015
  Candidate Propose
Isabel Novoa proposed the Biobank Hospital Universitari Vall d’Hebron Biobank for Spain.
Isabel Novoa proposed the Biobank Hospital Universitari Vall d’Hebron Biobank for Spain.
Hospital Universitari Vall d’Hebron Biobank (HUVH Biobank)
Biobank
Contact: Isabel Novoa
Address: Passeig de la Vall d'Hebron, 119-129. Edificio MaternoInfantil, planta 14. Barcelona 08035. Spain
URL: http://www.vhir.org/serveis/biobanc/presentacioplataforma.asp?Idioma=en&mv1=3&mv2=8&mh1=3&mh2=8&mh3=1&mh4=1
19/06/2015
New Registry Published: REGISTRO TOSCANO MALATTIE RARE
Registry REGISTRO TOSCANO MALATTIE RARE from Italy was published an is now listed in the catalouge.
Tuscany region’s rare diseases registry
Registry
--Maincontact--

19/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Tuscany Region’s rare diseases registry for Italy.
Paola Torreri proposed the Registry Tuscany Region’s rare diseases registry for Italy.
Tuscany Region’s rare diseases registry ()
Registry
Contact: Roberta Milone
Address:
URL: https://registripatologia.ftgm.it/rtmr/
18/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Registry of Ehlers Danlos Syndrome (RED) for Italy.
Paola Torreri proposed the Registry Registry of Ehlers Danlos Syndrome (RED) for Italy.
Registry of Ehlers Danlos Syndrome (RED) ()
Registry
Contact: Marina Mordenti
Address:
URL: www.ior.it
18/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Registry of Osteogenesis Imperfecta (ROI) for Italy.
Paola Torreri proposed the Registry Registry of Osteogenesis Imperfecta (ROI) for Italy.
Registry of Osteogenesis Imperfecta (ROI) ()
Registry
Contact: Marina Mordenti
Address:
URL: www.ior.it
18/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Registry of Multiple Ostechondromas (REM) for Italy.
Paola Torreri proposed the Registry Registry of Multiple Ostechondromas (REM) for Italy.
Registry of Multiple Ostechondromas (REM) ()
Registry
Contact: Marina Mordenti
Address:
URL: www.ior.it
18/06/2015
New Registry Published: Congenital Malformations Registry
Registry Congenital Malformations Registry from Italy was published an is now listed in the catalouge.
Congenital Malformations Registry
Registry
--Maincontact--

18/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Congenital Malformations Registry for Italy.
Paola Torreri proposed the Registry Congenital Malformations Registry for Italy.
Congenital Malformations Registry ()
Registry
Contact: Giuseppe De Biase
Address: Via Buccarelli Catanzaro
URL: http://www.regione.calabria.it/sanita/index.php?option=com_content&task=view&id=470&Itemid=184
18/06/2015
New Registry Published: Neuroendocrine Tumors - ENETS registry
Registry Neuroendocrine Tumors - ENETS registry from Greece was published an is now listed in the catalouge.
Neuroendocrine Tumors - ENETS registry
Registry
--Maincontact--

18/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Neuroendocrine Tumors - ENETS registry for Greece.
Paola Torreri proposed the Registry Neuroendocrine Tumors - ENETS registry for Greece.
Neuroendocrine Tumors - ENETS registry ()
Registry
Contact: Nikolaos Tsoukalas
Address: 105 L. Alexandras Avenue, 11475, Athens
URL: http://www.hesmo.gr/en/gyon/group
17/06/2015
New Registry Published: Lymphomas Database
Registry Lymphomas Database from Italy was published an is now listed in the catalouge.
Lymphomas Database
Registry
--Maincontact--

17/06/2015
  Candidate Propose
Paola Torreri proposed the Registry database lymphomas for Italy.
Paola Torreri proposed the Registry database lymphomas for Italy.
database lymphomas ()
Registry
Contact: Maria Cristina Cox
Address: via di grottarossa 1034
URL: www.retelazio.net
17/06/2015
New Registry Published: Venetian Region rare diseases register
Registry Venetian Region rare diseases register from Italy was published an is now listed in the catalouge.
Veneto Region’s rare diseases registry
Registry
--Maincontact--

17/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Venetian Region rare diseases register for Italy.
Paola Torreri proposed the Registry Venetian Region rare diseases register for Italy.
Venetian Region rare diseases register ()
Registry
Contact: Michela Calmasini
Address: Palazzo Balbi - Dorsoduro, 3901 - 30123 Venezia
URL: http://malattierare.regione.veneto.it/default.htm
17/06/2015
New Registry Published: Patient registry of the German Network for Systemic Scleroderma
Registry Patient registry of the German Network for Systemic Scleroderma from Germany was published an is now listed in the catalouge.
Patient registry of the German Network for Systemic Scleroderma
Registry
--Maincontact--

17/06/2015
New Registry Published: Registry for Haemoglobinopathies
Registry Registry for Haemoglobinopathies from Cyprus was published an is now listed in the catalouge.
Registry for Haemoglobinopathies
Registry
--Maincontact--

17/06/2015
New Registry Published: Haemoglobinopathy Registry
Registry Haemoglobinopathy Registry from Australia was published an is now listed in the catalouge.
Haemoglobinopathy Registry
Registry
--Maincontact--

17/06/2015
  Candidate Propose
Paola Torreri proposed the Registry Haemoglobinopathy Registry for Australia.
Paola Torreri proposed the Registry Haemoglobinopathy Registry for Australia.
Haemoglobinopathy Registry ()
Registry
Contact: Ri Scarborough
Address: 871 Dandenong Rd, Malvern East VIC 3145, Australia
URL: http://www.med.monash.edu.au/epidemiology/units-centres/transfusionresearch/hbr.html
17/06/2015
New Registry Published: National Registry for Haemoglobinopathies in Greece (NRHG)
Registry National Registry for Haemoglobinopathies in Greece (NRHG) from Greece was published an is now listed in the catalouge.
National Registry for Haemoglobinopathies in Greece (NRHG)
Registry
--Maincontact--

17/06/2015
New Registry Published: Haemoglobinopathies - database
Registry Haemoglobinopathies - database from Belgium was published an is now listed in the catalouge.
Haemoglobinopathies - database
Registry
--Maincontact--

17/06/2015
New Registry Published: NHR: National Haemoglobinopathy Registry
Registry NHR: National Haemoglobinopathy Registry from United Kingdom was published an is now listed in the catalouge.
NHR: National Haemoglobinopathy Registry
Registry
--Maincontact--

11/06/2015
New Registry Published: Italian Registry of Coagulopathies Congenital
Registry Italian Registry of Coagulopathies Congenital from Italy was published an is now listed in the catalouge.
Italian Registry of Congenital Coagulopathies
Registry
--Maincontact--

11/06/2015
  Candidate Propose
Sabina Gainotti proposed the Registry Italian Registry of Coagulopathies Congenital for Italy.
Sabina Gainotti proposed the Registry Italian Registry of Coagulopathies Congenital for Italy.
Italian Registry of Coagulopathies Congenital ()
Registry
Contact: Carla Faralli
Address: Viale Regina Elena 299
URL: http://www.iss.it/index.php?lang=1&id=153&tipo=45
11/06/2015
New Registry Published: Italian Registry of Hemolytic-Uremic Syndrome
Registry Italian Registry of Hemolytic-Uremic Syndrome from Italy was published an is now listed in the catalouge.
Italian Registry of Hemolytic-Uremic Syndrome
Registry
--Maincontact--

11/06/2015
  Candidate Propose
Sabina Gainotti proposed the Registry Italian Registry of Hemolytic-Uremic Syndrome for Italy.
Sabina Gainotti proposed the Registry Italian Registry of Hemolytic-Uremic Syndrome for Italy.
Italian Registry of Hemolytic-Uremic Syndrome ()
Registry
Contact: Gaia Scavia
Address:
URL: http://www.iss.it/seu/index.php?lang=1
10/06/2015
  Candidate Propose
gcxefal proposed the Registry gcxefal for Kenya.
gcxefal proposed the Registry gcxefal for Kenya.
gcxefal (LNuIgaKCXLDPicDOWsD)
Registry
Contact: luNyfRDgjgddp
Address: EkYcgqzB
URL: http://mkrtxfazdzka.com/
05/06/2015
  Candidate Propose
Mª Dolores Gómez Fernández proposed the Biobank Carmen Ayuso for all.
Mª Dolores Gómez Fernández proposed the Biobank Carmen Ayuso for all.
Carmen Ayuso ()
Biobank
Contact: Carmen Ayuso
Address: Fundación Jimenez Diaz - Avda. Reyes Catolicos, 2 28040 Madrid - Spain
URL:
31/05/2015
  Candidate Propose
Christopher Ludlam proposed the Registry EAHAD Clotting Factor Variant Databases for United Kingdom.
Christopher Ludlam proposed the Registry EAHAD Clotting Factor Variant Databases for United Kingdom.
EAHAD Clotting Factor Variant Databases ()
Registry
Contact: Christopher Ludlam
Address: European Association for Haemophilia and Allied Disorders (EAHAD), c/o Northern Networking Events Ltd, Scottish Enterprise Technology Park Nasmyth Building 2nd Floor, 60 Nasmyth Avenue, East Kilbride, Glasgow, UK
URL: http://www.eahad-db.org/
25/05/2015
Network Updated
The [url organization 88217]The NIH/NCATS GRDR® Program[urlend] added the Registry: [url organization 12017]The Transverse Myelitis Association[urlend] to the network.
The NIH/NCATS GRDR® Program
Network
--Maincontact--

25/05/2015
Network Updated
The [url organization 88217]The NIH/NCATS GRDR® Program[urlend] added the Registry: [url organization 11969]The North American Malignant Hyperthermia Registry of the Malignant Hyperthermia Association[urlend] to the network.
The NIH/NCATS GRDR® Program
Network
--Maincontact--

25/05/2015
Network Updated
The [url organization 88217]The NIH/NCATS GRDR® Program[urlend] added the Registry: [url organization 11801]Rare Cancer Genetics Registry[urlend] to the network.
The NIH/NCATS GRDR® Program
Network
--Maincontact--

25/05/2015
Network Updated
The [url organization 88217]The NIH/NCATS GRDR® Program[urlend] added the Registry: [url organization 11717]Pachyonychia Congenita Project[urlend] to the network.
The NIH/NCATS GRDR® Program
Network
--Maincontact--

25/05/2015
Network Updated
The [url organization 88217]The NIH/NCATS GRDR® Program[urlend] added the Registry: [url organization 11361]Intracranial Hypertension Research Foundation[urlend] to the network.
The NIH/NCATS GRDR® Program
Network
--Maincontact--

25/05/2015
Network Updated
The [url organization 88217]The NIH/NCATS GRDR® Program[urlend] added the Registry: [url organization 10941]Cornelia de Lange Syndrome Foundation[urlend] to the network.
The NIH/NCATS GRDR® Program
Network
--Maincontact--

21/05/2015
New Biobank Published: Bank of the Molecular Genetics Laboratory, UNIVERSITA TA MALTA
Biobank Bank of the Molecular Genetics Laboratory, UNIVERSITA TA MALTA from Malta was published an is now in the list redy for the pannel assessment invitation.
Malta BioBank
Biobank
--Maincontact--

21/05/2015
New Biobank Published: MRC Centre for Neuromuscular Diseases BioBank Newcastle
Biobank MRC Centre for Neuromuscular Diseases BioBank Newcastle from United Kingdom was published an is now in the list redy for the pannel assessment invitation.
Newcastle MRC Biobank for Rare and Neuromuscular Diseases
Biobank
--Maincontact--

20/05/2015
[$logoleft$]Data Updated: [url organization 16016]Registry of WP2 / WP3 developers[urlend][$logoright$]
[url organization 16016]Registry of WP2 / WP3 developers[urlend] updated the fields in reg_quality
[$longtext$]
20/05/2015
[$logoleft$]Data Updated: [url organization 16016]Registry of WP2 / WP3 developers[urlend][$logoright$]
[url organization 16016]Registry of WP2 / WP3 developers[urlend] updated the fields in reg_quality
[$longtext$]
19/05/2015
[$logoleft$]Data Updated: [url organization 16016]Registry of WP2 / WP3 developers[urlend][$logoright$]
[url organization 16016]Registry of WP2 / WP3 developers[urlend] updated the fields in reg_quality
[$longtext$]
18/05/2015
[$logoleft$]Data Updated: [url organization 16016]Registry of WP2 / WP3 developers[urlend][$logoright$]
[url organization 16016]Registry of WP2 / WP3 developers[urlend] updated the fields in reg_quality
[$longtext$]
18/05/2015
[$logoleft$]Data Updated: [url organization 16016]Registry of WP2 / WP3 developers[urlend][$logoright$]
[url organization 16016]Registry of WP2 / WP3 developers[urlend] updated the fields in reg_quality
[$longtext$]
14/05/2015
[$logoleft$]Data Updated: [url organization 16016]Registry of WP2 / WP3 developers[urlend][$logoright$]
[url organization 16016]Registry of WP2 / WP3 developers[urlend] updated the fields in reg_quality
[$longtext$]
14/05/2015
[$logoleft$]Data Updated: [url organization 16016]Registry of WP2 / WP3 developers[urlend][$logoright$]
[url organization 16016]Registry of WP2 / WP3 developers[urlend] updated the fields in reg_quality
[$longtext$]
14/05/2015
New Registry Published: European Porphyria Network
Registry European Porphyria Network from all was published an is now listed in the catalouge.
European Porphyria Registry (EPR)
Registry
--Maincontact--

14/05/2015
New Registry Published: REHAP: Spanish Registry of Pulmonary Arterial Hypertension
Registry REHAP: Spanish Registry of Pulmonary Arterial Hypertension from Spain was published an is now listed in the catalouge.
Spanish Registry of Pulmonary Arterial Hypertension (REHAP)
Registry
--Maincontact--

14/05/2015
New Registry Published: Spanish Overgrowth Syndrome Registry
Registry Spanish Overgrowth Syndrome Registry from Spain was published an is now listed in the catalouge.
Spanish Overgrowth Syndrome Registry
Registry
--Maincontact--

29/04/2015
New Registry Published: ESID registry
Registry ESID registry from Europe was published an is now listed in the catalouge.
ESID registry
Registry
--Maincontact--

29/04/2015
New Registry Published: National registry of patients with primary immunodeficiencies (PID) - BG
Registry National registry of patients with primary immunodeficiencies (PID) - BG from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of patients with primary immunodeficiencies
Registry
--Maincontact--

29/04/2015
New Registry Published: National registry of patients with Gaucher disease
Registry National registry of patients with Gaucher disease from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of patients with Gaucher disease
Registry
--Maincontact--

29/04/2015
  Candidate Propose
Paola Torreri proposed the Registry National registry of patients with Gaucher disease for Bulgaria.
Paola Torreri proposed the Registry National registry of patients with Gaucher disease for Bulgaria.
National registry of patients with Gaucher disease ()
Registry
Contact: Tsonka Miteva
Address: Information Centre for Rare Diseases and Orphan Drugs 15A Vasil Aprilov boulevard 4002 Plovdiv Bulgaria
URL: http://www.raredis.org/?p=4480&lang=en
28/04/2015
New Registry Published: National registry of patients with phenylketonuria - BG
Registry National registry of patients with phenylketonuria - BG from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of patients with phenylketonuria
Registry
--Maincontact--

28/04/2015
New Registry Published: National register of patients with Wilson disease in Bulgaria
Registry National register of patients with Wilson disease in Bulgaria from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of Wilson disease patients
Registry
--Maincontact--

28/04/2015
New Registry Published: National register of patients with Mucopolysaccharidosis in Bulgaria
Registry National register of patients with Mucopolysaccharidosis in Bulgaria from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of patients with mucopolysaccharidosis type II
Registry
--Maincontact--

28/04/2015
New Registry Published: National register of patients with HML in Bulgaria
Registry National register of patients with HML in Bulgaria from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of adult patients with chronic myeloid leukemia
Registry
--Maincontact--

28/04/2015
New Registry Published: National register of patients with hereditary angioedema in Bulgaria
Registry National register of patients with hereditary angioedema in Bulgaria from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of patients with hereditary angioedema
Registry
--Maincontact--

28/04/2015
New Registry Published: National register of patients with Cron disease in Bulgaria
Registry National register of patients with Cron disease in Bulgaria from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of patients with Crohn disease
Registry
--Maincontact--

28/04/2015
New Registry Published: Bulgarian registry of patients with thalassaemia
Registry Bulgarian registry of patients with thalassaemia from Bulgaria was published an is now listed in the catalouge.
Bulgarian registry of patients with thalassaemia major
Registry
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 12065]Vestibular Disorders Association[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 12029]Trisomy 18 Foundation[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11981]The Romberg’s Connection[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11945]The I Have IIH Foundation[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11921]The FPIES Foundation Global Registry[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11909]The Charles E. Holman Morgellons Disease Foundation[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11693]PROMPT (Prospective Registry of Multiplex Testing)[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11681]PRISMS, (Parents and Researchers Interested in Smith-Magenis Sydrome)[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11645]PMG Awareness Organization[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11633]PCDH19 Alliance[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11609]Organic Acidemia Association[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11445]Living With Trisomy 13[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11301]International Essential Tremor Foundation[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11193]Geisinger Autism & Developmental Medicine Institute[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11181]FOD (Fatty Oxidation Disorders) Family Support Group[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 11001]Dandy-Walker Alliance, Inc.[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 10881]C.R.A.V.A.T.[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 10809]American Partnership for Eosinophilic Disorders[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

26/04/2015
Network Updated
The [url organization 70983]PatientCrossroads[urlend] added the Registry: [url organization 10797]Alagille Syndrome Alliance International Registry[urlend] to the network.
PatientCrossroads
Network
--Maincontact--

23/04/2015
New Registry Published: Rare bleeding disorders database
Registry Rare bleeding disorders database from all was published an is now listed in the catalouge.
Rare Bleeding Disorders Database
Registry
--Maincontact--

23/04/2015
  Candidate Propose
Paola Torreri proposed the Registry Rare bleeding disorders database for all.
Paola Torreri proposed the Registry Rare bleeding disorders database for all.
Rare bleeding disorders database (PRO-RBDD)
Registry
Contact: Flora Peyvandi
Address:
URL: http://eu.rbdd.org/
23/04/2015
New Registry Published: RINEM Italian register multiple endocrine neoplasia
Registry RINEM Italian register multiple endocrine neoplasia from Italy was published an is now listed in the catalouge.
Italian register multiple endocrine neoplasia
Registry
--Maincontact--

23/04/2015
New Registry Published: Italian registry for MYH9-related thrombocytopenia
Registry Italian registry for MYH9-related thrombocytopenia from Italy was published an is now listed in the catalouge.
Italian registry for MYH9-related thrombocytopenia
Registry
--Maincontact--

22/04/2015
  Candidate Propose
Francesco De Portis proposed the Biobank Test Biobank for Antarctica.
Francesco De Portis proposed the Biobank Test Biobank for Antarctica.
Test Biobank (TEST)
Biobank
Contact: Francesco De Portis
Address:
URL:
21/04/2015
New Registry Published: REDIP: Spanish registry of primary immunodeficiencies
Registry REDIP: Spanish registry of primary immunodeficiencies from Spain was published an is now listed in the catalouge.
Spanish registry of primary immunodeficiencies
Registry
--Maincontact--

21/04/2015
New Registry Published: Spanish patient registry of hereditary angioedema
Registry Spanish patient registry of hereditary angioedema from Spain was published an is now listed in the catalouge.
Spanish patient registry of hereditary angioedema
Registry
--Maincontact--

21/04/2015
  Candidate Propose
Sabina Gainotti proposed the Registry sabina gainotti for Italy.
Sabina Gainotti proposed the Registry sabina gainotti for Italy.
sabina gainotti (blablabla)
Registry
Contact: sabina gainotti
Address: via giano della bella 34
URL:
21/04/2015
New Registry Published: Spanish Registry of Behçet Disease
Registry Spanish Registry of Behçet Disease from Spain was published an is now listed in the catalouge.
Spanish Registry of Behçet Disease
Registry
--Maincontact--

21/04/2015
  Candidate Propose
Paola Torreri proposed the Registry Spanish Registry of Behçet Disease for Spain.
Paola Torreri proposed the Registry Spanish Registry of Behçet Disease for Spain.
Spanish Registry of Behçet Disease ()
Registry
Contact: Mónica Rodríguez-Carballeira
Address:
URL:
21/04/2015
New Registry Published: Spanish Familial Adenomatous Polyposis Registry
Registry Spanish Familial Adenomatous Polyposis Registry from Spain was published an is now listed in the catalouge.
Spanish Registry of Familial Adenomatous Polyposis
Registry
--Maincontact--

20/04/2015
New Registry Published: NATIONAL REGYSTER CREUTZFELDT JAKOB DISEASES
Registry NATIONAL REGYSTER CREUTZFELDT JAKOB DISEASES from Spain was published an is now listed in the catalouge.
Spanish patient registry of transmissible spongiform encephalopathies
Registry
--Maincontact--

20/04/2015
  Candidate Propose
Francesco de portis proposed the Biobank Biobanca of banane for Antarctica.
Francesco de portis proposed the Biobank Biobanca of banane for Antarctica.
Biobanca of banane (BOB)
Biobank
Contact: francesco de portis
Address: via vai 102
URL: https://www.facebook.com/
17/04/2015
New Registry Published: Hemobase: Hemophilia mutations registry in Spanish population
Registry Hemobase: Hemophilia mutations registry in Spanish population from Spain was published an is now listed in the catalouge.
Hemobase: Hemophilia mutations registry in Spanish population
Registry
--Maincontact--

17/04/2015
New Registry Published: Spanish patient registry of hereditary retinal dystrophy
Registry Spanish patient registry of hereditary retinal dystrophy from Spain was published an is now listed in the catalouge.
Spanish patient registry of hereditary retinal dystrophy
Registry
--Maincontact--

17/04/2015
New Registry Published: Registro de familias afectadas por el Síndrome X Frágil
Registry Registro de familias afectadas por el Síndrome X Frágil from Spain was published an is now listed in the catalouge.
Registro de familias afectadas por el Síndrome X Frágil
Registry
--Maincontact--

16/04/2015
New Registry Published: Spanish Gaucher's disease registry
Registry Spanish Gaucher's disease registry from Spain was published an is now listed in the catalouge.
Spanish Gaucher's disease registry
Registry
--Maincontact--

16/04/2015
New Registry Published: TMADDD Database-Database of Thrombotic Microangiopathies and Dense Deposit Disease
Registry TMADDD Database-Database of Thrombotic Microangiopathies and Dense Deposit Disease from Spain was published an is now listed in the catalouge.
Atypical Hemolytic Uremic Syndrome (aHUS) and C3 Glomerulopathy (C3G) Database
Registry
--Maincontact--

16/04/2015
New Registry Published: Hiperoxaluria primaria
Registry Hiperoxaluria primaria from Spain was published an is now listed in the catalouge.
Hiperoxaluria primaria
Registry
--Maincontact--

16/04/2015
New Registry Published: RETEGEP: Spanish Registry of Gastroenteropancreatic Endocrine Tumors
Registry RETEGEP: Spanish Registry of Gastroenteropancreatic Endocrine Tumors from Spain was published an is now listed in the catalouge.
Spanish Registry of Gastroenteropancreatic Endocrine Tumors
Registry
--Maincontact--

16/04/2015
New Registry Published: Spanish alpha-1 antitrypsin deficiency registry (REDAAT)
Registry Spanish alpha-1 antitrypsin deficiency registry (REDAAT) from Spain was published an is now listed in the catalouge.
Spanish alpha-1 antitrypsin deficiency registry
Registry
--Maincontact--

16/04/2015
New Registry Published: CIBERNED DATA BASE NEUROMUSCULAR DISEASES
Registry CIBERNED DATA BASE NEUROMUSCULAR DISEASES from Spain was published an is now listed in the catalouge.
Spanish Registry of Neuromuscular Diseases
Registry
--Maincontact--

15/04/2015
New Registry Published: Tuberous sclerosis complex Natural History Database Project
Registry Tuberous sclerosis complex Natural History Database Project from United States was published an is now listed in the catalouge.
Tuberous sclerosis complex Natural History Database
Registry
--Maincontact--

15/04/2015
New Registry Published: Italian registry of hypertrophic cardiomyopathy in Anderson-Fabry disease
Registry Italian registry of hypertrophic cardiomyopathy in Anderson-Fabry disease from Italy was published an is now listed in the catalouge.
Italian registry of hypertrophic cardiomyopathy in Anderson-Fabry disease
Registry
--Maincontact--

15/04/2015
New Registry Published: Simba onlus
Registry Simba onlus from Italy was published an is now listed in the catalouge.
Behçet's disease registry
Registry
--Maincontact--

14/04/2015
New Registry Published: Italian registry for cri du chat syndrome (monosomy 5p)
Registry Italian registry for cri du chat syndrome (monosomy 5p) from Italy was published an is now listed in the catalouge.
Italian registry for cri du chat syndrome (monosomy 5p)
Registry
--Maincontact--

07/04/2015
  Candidate Propose
Sonia Segovia Simón proposed the Registry Spanish Registry of Neuromuscular Diseases for Spain.
Sonia Segovia Simón proposed the Registry Spanish Registry of Neuromuscular Diseases for Spain.
Spanish Registry of Neuromuscular Diseases (NMD-ES)
Registry
Contact: Sonia Segovia Simón
Address: Hospital de Sant Pau. Sant Antoni Mª Claret 167. 08025 Barcelona. Spain
URL: https://infodoctor.net/
03/04/2015
New Registry Published: Beta-hemolytic streptococcal infections
Registry Beta-hemolytic streptococcal infections from Italy was published an is now listed in the catalouge.
Beta-hemolytic streptococcal infections
Registry
--Maincontact--

03/04/2015
  Candidate Propose
Sabina Gainotti proposed the Registry Beta-hemolytic streptococcal infections for Italy.
Sabina Gainotti proposed the Registry Beta-hemolytic streptococcal infections for Italy.
Beta-hemolytic streptococcal infections ()
Registry
Contact: Roberta Creti
Address:
URL: http://www.iss.it/mipi/index.php?lang=1&id=193&tipo=1
01/04/2015
New Registry Published: Italian Registry for Myotonic Dystrophy
Registry Italian Registry for Myotonic Dystrophy from Italy was published an is now listed in the catalouge.
Italian Registry of Myotonic Dystrophy
Registry
--Maincontact--

01/04/2015
  Candidate Propose
Paola Torreri proposed the Registry Italian Registry for Myotonic Dystrophy for Italy.
Paola Torreri proposed the Registry Italian Registry for Myotonic Dystrophy for Italy.
Italian Registry for Myotonic Dystrophy ()
Registry
Contact: Barbara Fossati
Address:
URL: http://distrofiamiotonica.it/?page_id=4
01/04/2015
New Biobank Published: Parkinson Institute Biobank
Biobank Parkinson Institute Biobank from Italy was published an is now in the list redy for the pannel assessment invitation.
Parkinson Institute Biobank
Biobank
--Maincontact--

01/04/2015
New Biobank Published: Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation
Biobank Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation from Italy was published an is now in the list redy for the pannel assessment invitation.
Cells lines and DNA bank of Rett syndrome and other X-linked mental retardation
Biobank
--Maincontact--

01/04/2015
New Biobank Published: Neuromuscular Tissue Bank (NMTB), Department of Neurosciences, University of Padova
Biobank Neuromuscular Tissue Bank (NMTB), Department of Neurosciences, University of Padova from Italy was published an is now in the list redy for the pannel assessment invitation.
Neuromuscular Bank of Tissues and DNA samples
Biobank
--Maincontact--

01/04/2015
New Biobank Published: Galliera Genetic Bank
Biobank Galliera Genetic Bank from Italy was published an is now in the list redy for the pannel assessment invitation.
Galliera Genetic Bank
Biobank
--Maincontact--

01/04/2015
New Biobank Published: DNA cell lines and nerve-muscle-cardiac tissues bank, UOS Malattie Neuromuscolari, Universita' Studi
Biobank DNA cell lines and nerve-muscle-cardiac tissues bank, UOS Malattie Neuromuscolari, Universita' Studi from Italy was published an is now in the list redy for the pannel assessment invitation.
Biobank of skeletal muscle, peripheral nerve, DNA and cell cultures
Biobank
--Maincontact--

01/04/2015
New Biobank Published: Genomic Disorders Biobank
Biobank Genomic Disorders Biobank from Italy was published an is now in the list redy for the pannel assessment invitation.
Genomic and Genetic Disorders Biobank
Biobank
--Maincontact--

01/04/2015
New Biobank Published: Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge
Biobank Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge from Italy was published an is now in the list redy for the pannel assessment invitation.
Bank for the Diagnosis and Research on Neuromuscular Disorders (NHMGB), Cardiomyology and Medical Ge
Biobank
--Maincontact--

01/04/2015
New Biobank Published: Cell line and DNA Biobank from patients affected by Genetic Diseases
Biobank Cell line and DNA Biobank from patients affected by Genetic Diseases from Italy was published an is now listed in the catalouge.
Cell line and DNA Biobank from patients affected by Genetic Diseases
Biobank
--Maincontact--

01/04/2015
New Biobank Published: Bank of the Muscle Cell Biology Laboratory, Fondazione I.R.C.C.S Istituto Neurologico Carlo Besta
Biobank Bank of the Muscle Cell Biology Laboratory, Fondazione I.R.C.C.S Istituto Neurologico Carlo Besta from Italy was published an is now listed in the catalouge.
Bank "Cells, tissues and DNA from patients with neuromuscular diseases", Ist. Neurologico C. Besta
Biobank
--Maincontact--

01/04/2015
New Biobank Published: CIBERER Biobank
Biobank CIBERER Biobank from Spain was published an is now in the list redy for the pannel assessment invitation.
CIBERER Biobank
Biobank
--Maincontact--

31/03/2015
New Registry Published: Membranous Nephropathy Registry
Registry Membranous Nephropathy Registry from all was published an is now listed in the catalouge.
Membranous Nephropathy Registry
Registry
--Maincontact--

31/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Membranous Nephropathy Registry for all.
Paola Torreri proposed the Registry Membranous Nephropathy Registry for all.
Membranous Nephropathy Registry ()
Registry
Contact: contact
Address:
URL: https://mnregistry.eu/index.php?id=about
30/03/2015
New Registry Published: RICH: Italian registry of infants with congenital hypothyroidism
Registry RICH: Italian registry of infants with congenital hypothyroidism from Italy was published an is now listed in the catalouge.
Italian registry of infants with congenital hypothyroidism
Registry
--Maincontact--

30/03/2015
New Registry Published: Italian genetic movement disorders registry
Registry Italian genetic movement disorders registry from Italy was published an is now listed in the catalouge.
Italian genetic movement disorders registry
Registry
--Maincontact--

30/03/2015
New Registry Published: Italian registry of maturity onset diabetes of the young (MODY)
Registry Italian registry of maturity onset diabetes of the young (MODY) from Italy was published an is now listed in the catalouge.
Italian registry of maturity onset diabetes of the young
Registry
--Maincontact--

30/03/2015
New Registry Published: RISMD: Italian myelodysplastic syndromes registry
Registry RISMD: Italian myelodysplastic syndromes registry from Italy was published an is now listed in the catalouge.
Italian Network MDS Registry (FISM_registry)
Registry
--Maincontact--

30/03/2015
New Registry Published: Friedreich's ataxia Italian patient registry
Registry Friedreich's ataxia Italian patient registry from Italy was published an is now listed in the catalouge.
Friedreich's ataxia Italian patient registry
Registry
--Maincontact--

30/03/2015
New Registry Published: REGISTRO dell'AIMA-Child associazione Italiana Malformazione di Arnold-Chiari Child
Registry REGISTRO dell'AIMA-Child associazione Italiana Malformazione di Arnold-Chiari Child from Italy was published an is now listed in the catalouge.
Italian registry of Arnold-Chiari malformation
Registry
--Maincontact--

30/03/2015
New Registry Published: REGISTRO ASSUNTORI ORMONE DELLA CRESCITA
Registry REGISTRO ASSUNTORI ORMONE DELLA CRESCITA from Italy was published an is now listed in the catalouge.
Italian registry of Growth Hormone
Registry
--Maincontact--

30/03/2015
New Registry Published: Italian severe chronic neutropenia registry
Registry Italian severe chronic neutropenia registry from Italy was published an is now listed in the catalouge.
Italian Severe Chronic Neutropenia International Registry
Registry
--Maincontact--

30/03/2015
New Registry Published: Registro Siciliano delle Talassemie ed Emoglobinopatie ( Re. S. T. E. )
Registry Registro Siciliano delle Talassemie ed Emoglobinopatie ( Re. S. T. E. ) from Italy was published an is now listed in the catalouge.
Registro Siciliano delle Talassemie ed Emoglobinopatie (Re.S.T.E.)
Registry
--Maincontact--

30/03/2015
New Registry Published: IBAHC: Italian registry for alternating hemiplegia of childhood
Registry IBAHC: Italian registry for alternating hemiplegia of childhood from Italy was published an is now listed in the catalouge.
IBAHC: Italian registry for alternating hemiplegia of childhood
Registry
--Maincontact--

30/03/2015
New Registry Published: Registro neurofibromatosi
Registry Registro neurofibromatosi from Italy was published an is now listed in the catalouge.
Registry of Neurofibromatosis
Registry
--Maincontact--

30/03/2015
[$logoleft$]Biobank requesed a pannel assessment: Bank of the Muscle Cell Biology Laboratory, Fondazione I.R.C.C.S Istituto Neurologico Carlo Besta[$logoright$]
Biobank Bank of the Muscle Cell Biology Laboratory, Fondazione I.R.C.C.S Istituto Neurologico Carlo Besta from Italy requesed a pannel assessment.
[$longtext$]
27/03/2015
New Registry Published: Italian Registry of Kernicterus and hyperbilirubinemia
Registry Italian Registry of Kernicterus and hyperbilirubinemia from Italy was published an is now listed in the catalouge.
Italian Registry of Kernicterus and hyperbilirubinemia
Registry
--Maincontact--

27/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Italian Registry of Kernicterus and hyperbilirubinemia for Italy.
Paola Torreri proposed the Registry Italian Registry of Kernicterus and hyperbilirubinemia for Italy.
Italian Registry of Kernicterus and hyperbilirubinemia (RIKI)
Registry
Contact: Federica Pieroni
Address:
URL: http://ambiente-salute.it/index.php/progetto/registro-italiano-del-kernicterus-e-delliperbilirubinemia-riki/
27/03/2015
[$logoleft$]Biobank requesed a pannel assessment: Cell line and DNA Biobank from patients affected by Genetic Diseases[$logoright$]
Biobank Cell line and DNA Biobank from patients affected by Genetic Diseases from Italy requesed a pannel assessment.
[$longtext$]
27/03/2015
New Registry Published: National Registry of Dravet syndrome and other syndromes related to mutations of the genes SCN1A and
Registry National Registry of Dravet syndrome and other syndromes related to mutations of the genes SCN1A and from Italy was published an is now listed in the catalouge.
Registry of Dravet syndrome and syndromes related to mutations of the genes SCN1A and PCDH19
Registry
--Maincontact--

27/03/2015
  Candidate Propose
Paola Torreri proposed the Registry National Registry of Dravet syndrome and other syndromes related to mutations of the genes SCN1A and PCDH19 for Italy.
Paola Torreri proposed the Registry National Registry of Dravet syndrome and other syndromes related to mutations of the genes SCN1A and PCDH19 for Italy.
National Registry of Dravet syndrome and other syndromes related to mutations of the genes SCN1A and PCDH19 ()
Registry
Contact: Federica Pieroni
Address:
URL: http://ambiente-salute.it/index.php/progetto/registro-nazionale-sindrome-di-dravet-e-altre-sindromi-correlate-a-mutazioni-dei-geni-scn1a-e-pcdh19/
27/03/2015
  Candidate Propose
Marina Mora proposed the Biobank Cells, tissues and DNA from patients with neuromuscular diseases for Italy.
Marina Mora proposed the Biobank Cells, tissues and DNA from patients with neuromuscular diseases for Italy.
Cells, tissues and DNA from patients with neuromuscular diseases (NeuMD-Besta)
Biobank
Contact: Marina Mora
Address:
URL:
27/03/2015
New Registry Published: Sporadic degenerative ataxia with adult onset
Registry Sporadic degenerative ataxia with adult onset from Germany was published an is now listed in the catalouge.
European registry of sporadic degenerative ataxia with adult onset
Registry
--Maincontact--

27/03/2015
New Registry Published: Early Onset Ataxias
Registry Early Onset Ataxias from Germany was published an is now listed in the catalouge.
Early Onset Ataxias
Registry
--Maincontact--

27/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Early Onset Ataxias for Germany.
Paola Torreri proposed the Registry Early Onset Ataxias for Germany.
Early Onset Ataxias (EOA)
Registry
Contact: Brigitte Paap
Address:
URL: http://www.ataxia-study-group.net/html/studies/eoa?clps3157_n2140615306=1
27/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Sporadic degenerative ataxia with adult onset for Germany.
Paola Torreri proposed the Registry Sporadic degenerative ataxia with adult onset for Germany.
Sporadic degenerative ataxia with adult onset (SPORTAX)
Registry
Contact: Brigitte Paap
Address:
URL: http://www.ataxia-study-group.net/html/studies/sportax?clps2509_n1718031554=1
27/03/2015
New Registry Published: FMF: Italian registry for familial mediterranean fever in the young
Registry FMF: Italian registry for familial mediterranean fever in the young from Italy was published an is now listed in the catalouge.
FMF: Italian registry for familial mediterranean fever
Registry
--Maincontact--

27/03/2015
New Registry Published: RIMM: Italian registry for myelofibrosis with myeloid metaplasia
Registry RIMM: Italian registry for myelofibrosis with myeloid metaplasia from Italy was published an is now listed in the catalouge.
RIMM: Italian registry for myelofibrosis with myeloid metaplasia
Registry
--Maincontact--

27/03/2015
New Registry Published: Italian registry of Creutzfeldt-Jakob disease and correlated syndromes
Registry Italian registry of Creutzfeldt-Jakob disease and correlated syndromes from Italy was published an is now listed in the catalouge.
Italian registry of Creutzfeldt-Jakob disease and correlated syndromes
Registry
--Maincontact--

27/03/2015
New Registry Published: Tuscany registry of congenital anomalies
Registry Tuscany registry of congenital anomalies from Italy was published an is now listed in the catalouge.
Tuscany registry of congenital defects
Registry
--Maincontact--

27/03/2015
New Registry Published: Italian Li-Fraumeni syndrome registry
Registry Italian Li-Fraumeni syndrome registry from Italy was published an is now listed in the catalouge.
Registry of Ehlers-Danlos Syndrome
Registry
--Maincontact--

27/03/2015
New Registry Published: Italian registry for hereditary multiple exostoses
Registry Italian registry for hereditary multiple exostoses from Italy was published an is now listed in the catalouge.
Registry of Multiple Ostechondromas
Registry
--Maincontact--

27/03/2015
New Registry Published: Italian registry of skeletal dysplasia
Registry Italian registry of skeletal dysplasia from Italy was published an is now listed in the catalouge.
Registry of Osteogenesis Imperfecta
Registry
--Maincontact--

27/03/2015
New Registry Published: Italian registry of congenital nephrotic syndromes
Registry Italian registry of congenital nephrotic syndromes from Italy was published an is now listed in the catalouge.
International registry of Congenital Dyserythropoietic Anemia type II
Registry
--Maincontact--

25/03/2015
New Registry Published: German vasculitis registry
Registry German vasculitis registry from Germany was published an is now listed in the catalouge.
German vasculitis registry
Registry
--Maincontact--

25/03/2015
New Registry Published: French cystinosis registry
Registry French cystinosis registry from France was published an is now listed in the catalouge.
French cystinosis registry
Registry
--Maincontact--

25/03/2015
  Candidate Propose
Marina Mora proposed the Biobank Cells, tissues and DNA from patients with neuromuscular diseases for Italy.
Marina Mora proposed the Biobank Cells, tissues and DNA from patients with neuromuscular diseases for Italy.
Cells, tissues and DNA from patients with neuromuscular diseases (Neu-MD-Besta)
Biobank
Contact: Marina Mora
Address: Istituto Neurologico C. Besta, Via Celoria 11, 20133 Milano
URL: http://www.biobanknetwork.org/page.php?ID=Catalogue
25/03/2015
  Candidate Propose
Marina Mora proposed the Biobank Cells, tissues and DNA from patients with neuromuscular diseases for Italy.
Marina Mora proposed the Biobank Cells, tissues and DNA from patients with neuromuscular diseases for Italy.
Cells, tissues and DNA from patients with neuromuscular diseases (NeuMD-Besta)
Biobank
Contact: Marina Mora
Address: Istituto Neurologico C. Besta, via Celoria 11 20133 Millano
URL: www.istituto-besta.it
24/03/2015
New Registry Published: Ring14 database
Registry Ring14 database from Italy was published an is now listed in the catalouge.
Ring14 Clinical database
Registry
--Maincontact--

24/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Ring14 database for Italy.
Paola Torreri proposed the Registry Ring14 database for Italy.
Ring14 database ()
Registry
Contact: Marco Crimi
Address:
URL: http://www.ring14.org/eng/120/database/
24/03/2015
New Registry Published: European LeukoDataBase
Registry European LeukoDataBase from all was published an is now listed in the catalouge.
European LeukoDataBase
Registry
--Maincontact--

24/03/2015
  Candidate Propose
Paola Torreri proposed the Registry European LeukoDataBase for all.
Paola Torreri proposed the Registry European LeukoDataBase for all.
European LeukoDataBase ()
Registry
Contact: Odile Boespflug-Tanguy
Address:
URL:
24/03/2015
New Registry Published: Leukofrance database and biobank
Registry Leukofrance database and biobank from France was published an is now listed in the catalouge.
Leukofrance database and biobank
Registry
--Maincontact--

24/03/2015
  Candidate Propose
Paola Torreri proposed the Biobank/Registry Leukofrance database and biobank for France.
Paola Torreri proposed the Biobank/Registry Leukofrance database and biobank for France.
Leukofrance database and biobank ()
Biobank/Registry
Contact: Odile Boespflug-Tanguy
Address:
URL:
23/03/2015
New Registry Published: Marfan syndrome registry
Registry Marfan syndrome registry from France was published an is now listed in the catalouge.
Marfan Syndrome and Associated Pathologies registries
Registry
--Maincontact--

23/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Marfan syndrome registry for France.
Paola Torreri proposed the Registry Marfan syndrome registry for France.
Marfan syndrome registry ()
Registry
Contact: Gwenaelle Collod-Beroud
Address:
URL: http://www.umd.be/
19/03/2015
New Registry Published: GDCN Patient Registries
Registry GDCN Patient Registries from United States was published an is now listed in the catalouge.
GDCN Patient Registries
Registry
--Maincontact--

19/03/2015
  Candidate Propose
Paola Torreri proposed the Registry GDCN Patient Registries for United States.
Paola Torreri proposed the Registry GDCN Patient Registries for United States.
GDCN Patient Registries (GDCN)
Registry
Contact: Suzanne Hosman
Address: 7024 Burnett-Womack Bldg
URL: http://www.unckidneycenter.org/about/registries.html
19/03/2015
New Registry Published: French registry of autosomal recessive polycystic kidney disease
Registry French registry of autosomal recessive polycystic kidney disease from France was published an is now listed in the catalouge.
French registry of autosomal recessive polycystic kidney disease
Registry
--Maincontact--

19/03/2015
New Registry Published: French registry of atypical child hemolytic uremic syndrome
Registry French registry of atypical child hemolytic uremic syndrome from France was published an is now listed in the catalouge.
French registry of atypical child hemolytic uremic syndrome
Registry
--Maincontact--

19/03/2015
New Registry Published: Glomerulonephritis registry
Registry Glomerulonephritis registry from Canada was published an is now listed in the catalouge.
Glomerulonephritis registry
Registry
--Maincontact--

09/03/2015
  Candidate Propose
Isabel Illa Sendra proposed the Registry Spanish Registry of Neuromuscular Diseases for Spain.
Isabel Illa Sendra proposed the Registry Spanish Registry of Neuromuscular Diseases for Spain.
Spanish Registry of Neuromuscular Diseases (NMD-ES)
Registry
Contact: Sonia Segovia Simón
Address: Hospital Sant Pau. Sant Antoni Mª Claret 167. 08025 Barcelona
URL:
03/03/2015
New Registry Published: International Spinal Muscular Atrophy Patient Registry
Registry International Spinal Muscular Atrophy Patient Registry from United States was published an is now listed in the catalouge.
International Spinal Muscular Atrophy Patient Registry
Registry
--Maincontact--

03/03/2015
New Registry Published: Duchenne and Becker muscular dystrophy and spinal muscular dystrophy patient registries in Italy
Registry Duchenne and Becker muscular dystrophy and spinal muscular dystrophy patient registries in Italy from Italy was published an is now listed in the catalouge.
The Italian Registry of NMD Patients
Registry
--Maincontact--

03/03/2015
New Registry Published: Japanese patient registry for Duchenne Muscular Dystrophy (Remudy; REgistry of Muscular DYstrophy)
Registry Japanese patient registry for Duchenne Muscular Dystrophy (Remudy; REgistry of Muscular DYstrophy) from Japan was published an is now listed in the catalouge.
Japanese patient registry for Neuromuscular diseases
Registry
--Maincontact--

02/03/2015
New Registry Published: Duchenne and Becker muscular dystrophy and spinal muscular dystrophy patient registries in Poland
Registry Duchenne and Becker muscular dystrophy and spinal muscular dystrophy patient registries in Poland from Poland was published an is now listed in the catalouge.
Duchenne and Becker muscular dystrophy and spinalmuscular dystrophy patient registries in Poland
Registry
--Maincontact--

02/03/2015
New Registry Published: Hellenic Neuromuscular Disorders Registry
Registry Hellenic Neuromuscular Disorders Registry from Greece was published an is now listed in the catalouge.
Hellenic Neuromuscular Disorders Registry
Registry
--Maincontact--

02/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Hellenic Neuromuscular Disorders Registry for Greece.
Paola Torreri proposed the Registry Hellenic Neuromuscular Disorders Registry for Greece.
Hellenic Neuromuscular Disorders Registry (HNDR)
Registry
Contact: Kosma
Address:
URL:
02/03/2015
New Registry Published: French registry of patients with a dystrophinopathy (Duchenne or Becker Musucular Dystrophy)
Registry French registry of patients with a dystrophinopathy (Duchenne or Becker Musucular Dystrophy) from France was published an is now listed in the catalouge.
French registry of patients with a dystrophinopathy (Duchenne or Becker Musucular Dystrophy)
Registry
--Maincontact--

02/03/2015
New Registry Published: Danish registry for neuromuscular diseases
Registry Danish registry for neuromuscular diseases from Denmark was published an is now listed in the catalouge.
Danish registry for neuromuscular diseases
Registry
--Maincontact--

02/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Danish registry for neuromuscular diseases for Denmark.
Paola Torreri proposed the Registry Danish registry for neuromuscular diseases for Denmark.
Danish registry for neuromuscular diseases ()
Registry
Contact: Ole Gredal
Address:
URL: http://rcfm.dk/
02/03/2015
New Registry Published: Cypriot Neuromuscular Diseases Registry
Registry Cypriot Neuromuscular Diseases Registry from Cyprus was published an is now listed in the catalouge.
Cypriot Neuromuscular Diseases Registry
Registry
--Maincontact--

02/03/2015
  Candidate Propose
Paola Torreri proposed the Registry Cypriot Neuromuscular Diseases Registry for all.
Paola Torreri proposed the Registry Cypriot Neuromuscular Diseases Registry for all.
Cypriot Neuromuscular Diseases Registry (NMDcy)
Registry
Contact: Nikoletta Nikoleko
Address:
URL: http://nmdcy.org/?q=dmdregistry
02/03/2015
New Registry Published: Register for neuromuscular disease
Registry Register for neuromuscular disease from Croatia was published an is now listed in the catalouge.
Registry for neuromuscular disease
Registry
--Maincontact--

27/02/2015
New Registry Published: Family Registry for Centronuclear and Myotubular Myopathies
Registry Family Registry for Centronuclear and Myotubular Myopathies from United States was published an is now listed in the catalouge.
International Family Registry for Centronuclear and Myotubular Myopathies
Registry
--Maincontact--

27/02/2015
New Registry Published: Myotubular Myopathy
Registry Myotubular Myopathy from Portugal was published an is now listed in the catalouge.
Leiden Muscular Dystrophy pages Myotubularin 1
Registry
--Maincontact--

27/02/2015
New Registry Published: Hungarian patient registry for Duchenne Muscular Dystrophy
Registry Hungarian patient registry for Duchenne Muscular Dystrophy from Hungary was published an is now listed in the catalouge.
Hungarian patient registry for Duchenne Muscular Dystrophy
Registry
--Maincontact--

27/02/2015
New Registry Published: Turkish patient registries for DMD and SMA
Registry Turkish patient registries for DMD and SMA from Turkey was published an is now listed in the catalouge.
Turkish patient registries for DMD and SMA
Registry
--Maincontact--

26/02/2015
New Registry Published: Jain Foundation patient registry
Registry Jain Foundation patient registry from International was published an is now listed in the catalouge.
Jain Foundation patient registry
Registry
--Maincontact--

26/02/2015
New Registry Published: EMSA-SG: central patient registry of the European multiple system atrophy network
Registry EMSA-SG: central patient registry of the European multiple system atrophy network from Europe was published an is now listed in the catalouge.
EMSA-SG: central patient registry of the European multiple system atrophy network
Registry
--Maincontact--

26/02/2015
New Registry Published: FARA patient registry
Registry FARA patient registry from International was published an is now listed in the catalouge.
International Friedreich Ataxia Research Alliance registry
Registry
--Maincontact--

26/02/2015
New Registry Published: Irish Motor Neurone Disease Register
Registry Irish Motor Neurone Disease Register from Ireland was published an is now listed in the catalouge.
Irish Motor Neurone Disease Register
Registry
--Maincontact--

26/02/2015
New Registry Published: RIAT: Ataxia teleangiectasia Italian registry
Registry RIAT: Ataxia teleangiectasia Italian registry from Italy was published an is now listed in the catalouge.
RIAT: Ataxia teleangiectasia Italian registry
Registry
--Maincontact--

25/02/2015
New Registry Published: Spanish patient registry of ataxias
Registry Spanish patient registry of ataxias from Spain was published an is now listed in the catalouge.
Spanish patient registry of ataxias
Registry
--Maincontact--

25/02/2015
New Registry Published: ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Registry ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy from Netherlands was published an is now listed in the catalouge.
ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Registry
--Maincontact--

25/02/2015
New Biobank Published: Cell line and DNA Biobank from patients affected by Genetic Diseases
Biobank Cell line and DNA Biobank from patients affected by Genetic Diseases from Italy was published an is now in the list redy for the pannel assessment invitation.
Cell line and DNA Biobank from patients affected by Genetic Diseases
Biobank
--Maincontact--

25/02/2015
  Candidate Propose
Paola Torreri proposed the Registry Cooperative European Paediatric Renal TransplAnt INitiative registry for all.
Paola Torreri proposed the Registry Cooperative European Paediatric Renal TransplAnt INitiative registry for all.
Cooperative European Paediatric Renal TransplAnt INitiative registry (CERTAIN)
Registry
Contact: Barbara Korn
Address: University Children´s Hospital Im Neuenheimer Feld 430 D-69120 Heidelberg Germany
URL: http://www.certain-registry.eu/team.html
25/02/2015
New Registry Published: National nephrogenic systemic fibrosis registry
Registry National nephrogenic systemic fibrosis registry from Germany was published an is now listed in the catalouge.
National nephrogenic systemic fibrosis registry
Registry
--Maincontact--

24/02/2015
New Registry Published: Nephronophthisis registry for patients in Germany, Austria and Switzerland
Registry Nephronophthisis registry for patients in Germany, Austria and Switzerland from Germany was published an is now listed in the catalouge.
Nephronophthisis registry for patients in Germany, Austria and Switzerland
Registry
--Maincontact--

24/02/2015
  Candidate Propose
Paola Torreri proposed the Registry Nephronophthisis registry for patients in Germany, Austria and Switzerland for Germany.
Paola Torreri proposed the Registry Nephronophthisis registry for patients in Germany, Austria and Switzerland for Germany.
Nephronophthisis registry for patients in Germany, Austria and Switzerland ()
Registry
Contact: Dr Jens KÖNIG
Address:
URL: http://campus.uni-muenster.de/3529.html
24/02/2015
New Registry Published: Lupus nephritis registry (established by the german paediatric nephrology association)
Registry Lupus nephritis registry (established by the german paediatric nephrology association) from Germany was published an is now listed in the catalouge.
Lupus nephritis registry (established by the german paediatric nephrology association)
Registry
--Maincontact--

24/02/2015
New Registry Published: French auto-immunity and Rituximab (AIR) registry: prospective study of patients treated with Rituxi
Registry French auto-immunity and Rituximab (AIR) registry: prospective study of patients treated with Rituxi from France was published an is now listed in the catalouge.
French auto-immunity and Rituximab (AIR) registry
Registry
--Maincontact--

23/02/2015
New Registry Published: Test Propose Registry
Registry Test Propose Registry from Afghanistan was published an is now listed in the catalouge.
Test Propose Registry
Registry
--Maincontact--

22/02/2015
  Candidate Propose
Robert Reihs proposed the Registry Test Propose Registry for Afghanistan.
Robert Reihs proposed the Registry Test Propose Registry for Afghanistan.
Test Propose Registry (TRP)
Registry
Contact: Robert Reihs
Address: Daheim 1
URL: www.google.com
22/02/2015
  Candidate Propose
Robert Reihs proposed the Registry Registry of Test for country Afghanistan.
Robert Reihs proposed the Registry Registry of Test for country Afghanistan.

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