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Funded by an IRDiRC member = 
Member of a ERN = 
Registries and Biobanks
FRANCE
ILE-DE-FRANCE
PARIS
CoF-AT study: a French cohort on ataxia-telangiectasia
CLCC Institut Curie
Cancer et génome: bioinformatique, biostatistiques et épidémiologie d'un systčme complexe
FRANCE
ILE-DE-FRANCE
PARIS
CoF-AT study: a French cohort on ataxia-telangiectasia
CLCC Institut Curie
Service de Génétique
GERMANY
Hessen
FRANKFURT AM MAIN
Ataxia-Telangiectasia patient registry - contributes to the ESID Database
Universitätsklinikum Frankfurt
Schwerpunkt Allergologie, Pneumologie und Mukoviszidose
GERMANY
Hessen
MARBURG
German national case collection of familial pancreatic cancer
Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg
Klinik für Visceral- Thorax- und Gefäßchirurgie
ITALY
LAZIO
ROMA
RIAT: Ataxia teleangiectasia Italian registry
A.O. S. Andrea
Servizio di Genetica Medica
ITALY
LAZIO
ROMA
V-RIAT: variant Ataxia telangiectasia Italian registry
A.O. S. Andrea
Servizio di Genetica Medica
ITALY
LIGURIA
GENOVA
Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche
SPAIN
Cataluńa
BELLATERRA
DNA repair biobank
Universitat Autňnoma de Barcelona
Grupo de inestabilidad genómica y reparación del DNA
SWEDEN
Region Skĺne
LUND
MRE11Abase: Mutation registry for Ataxia-telangiectasia-like disorder (ATLD)
Lund University
Department of Experimental Medical Science
UNITED KINGDOM
Nottinghamshire
NOTTINGHAM
Ataxia-Telangiectasia International Registry (A-T Society)
William Whitehouse
Pediatric Neurology Department
UNITED KINGDOM
Tyne & Wear
NEWCASTLE UPON TYNE
International A-T Registry
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine
GERMANY
Baden-Württemberg
HEIDELBERG
National Cancer-predisposing syndrome registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg
GERMANY
Baden-Württemberg
TÜBINGEN
GeNeMove: CP2 Central DNA-Bank
Institut für Medizinische Genetik und angewandte Genomik Tübingen
Institut für Medizinische Genetik und angewandte Genomik
GERMANY
Baden-Württemberg
TÜBINGEN
EUROSCA-R: European biobank on spinocerebellar ataxias
Institut für Medizinische Genetik und angewandte Genomik Tübingen
Institut für Medizinische Genetik und angewandte Genomik
GERMANY
Niedersachsen
HANNOVER
National Cancer-predisposing syndrome registry
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie
GERMANY
Nordrhein-Westfalen
BONN
EUROSCA-R: European biobank on spinocerebellar ataxias
Universitätsklinikum Bonn (AöR)
Klinik und Poliklinik für Neurologie
ITALY
TOSCANA
SIENA
Genetic Biobank of Siena
Azienda Ospedaliera Universitaria Senese - Policlinico Santa Maria alle Scotte
U.O.C. di Genetica Medica
PORTUGAL
CENTRO
COIMBRA
Central regional cancer patient registry
Instituto Portuguęs de Oncologia de Coimbra de Francisco Gentil, EPE
Registo Oncológico Regional - Zona Centro
PORTUGAL
ILHAS
AÇORES
Açores regional cancer patient registry (RORA)
Centro de Oncologia dos Açores Prof Doutor José Conde
Registo Oncológico Regional dos Açores
PORTUGAL
NORTE
PORTO
North regional cancer registry (RORENO)
Instituto Portuguęs de Oncologia do Porto, EPE / IPOFG - CRO Porto
Registo Oncológico Regional do Norte
PORTUGAL
NORTE
VILA NOVA DE GAIA
Vila Nova de Gaia regional cancer registry (ROG)
Centro Hospitalar de Vila Nova de Gaia
Registo de Cancro (ROG)
AUSTRIA
TIROL
INNSBRUCK
Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck
BELGIUM
ANTWERPEN
ANTWERPEN
Collection of FRA12A carrier DNA samples
University of Antwerp - UA
Medical Genetics Unit
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases
DENMARK
Sjćlland
COPENHAGEN
Mendelian cytogenetics network online database
The Panum Institute-University of Copenhagen
Department of Cellular and Molecular Medicine
ESTONIA
Tartu
TARTU
Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre
FRANCE
GRAND-EST
ILLKIRCH-GRAFFENSTADEN
RaDiCo-GenIDA: International social network for data collection on the natural history of rare monogenic forms of intellectual disabilities
Institut de génétique et de biologie moléculaire et cellulaire - IGBMC
Département Médecine translationnelle et neurogénétique
FRANCE
ILE-DE-FRANCE
PARIS
French National Registry for Rare Diseases (BNDMR)
AP-HP Campus Picpus - Département WIND (Web Innovation Données)
Banque Nationale de Données Maladies Rares (BNDMR)
FRANCE
ILE-DE-FRANCE
PARIS
ERN [ITHACA] - ILIAD Rare Diseases patient registry: an International Library of Intellectual disability and Anomalies of Development
CHU Paris - Hôpital Robert Debré
UF de Génétique clinique
GERMANY
Baden-Württemberg
TÜBINGEN
ERN [RND] - ERN-RND Registry: The ERN-RND Rare Neurological Disease Registry
Institut für Medizinische Genetik und angewandte Genomik Tübingen
Institut für Medizinische Genetik und angewandte Genomik
GREECE
ATTIKI
ATHENS
PATIENT REGISTRY AND DNA BIOBANK ON NEUROGENETIC DISORDERS
University of Athens - Medical school
Neurogenetics Unit
ITALY
LIGURIA
GENOVA
Telethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche
ITALY
LIGURIA
GENOVA
Genetic Biobank of the Human Genetics Laboratory (BGU-IGG)
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O.C. Laboratorio di Genetica Umana
KOREA, REPUBLIC OF
KOREA, REPUBLIC OF
SEOUL
Korean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory
MOROCCO
Rabat
RABAT
Moroccan National Genetic Database
Institut National d'Hygične
Département de génétique médicale
NETHERLANDS
Limburg
MAASTRICHT
Biobank Intellectual Disability and Multiple Congenital Anomalies (DNA)
AZM - Academisch Ziekenhuis Maastricht
Afdeling Klinische Genetica
NETHERLANDS
Limburg
MAASTRICHT
Biobank Intellectual Disability and Multiple Congenital Anomalies (DNA)
AZM - Academisch Ziekenhuis Maastricht
Biobank Klinische Genetica Maastricht
NORWAY
Řstlandet
OSLO
Norwegian registry on rare disorders
Oslo University Hospital, Ullevaal
Norsk register for sjeldne diagnoser
SPAIN
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Dirección General de Calidad, Investigación y Gestión del Conocimiento
SPAIN
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria
SPAIN
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Servicio de Epidemiología
SPAIN
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Dirección General de Salud Pública y Consumo
SPAIN
Cantabria
SANTANDER
Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Gobierno de Cantabria. Consejería de Sanidad y Servicios Sociales
Servicio de Atención Sanitaria
SPAIN
Comunidad Valenciana
VALENCIA
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras
SPAIN
Comunidad Valenciana
VALENCIA
CIBERER Biobank (Biobank of rare diseases)
IIS La Fe - Instituto de Investigación Sanitaria La Fe
Grupo de investigación en biomedicina molecular, celular y genómica
SPAIN
Comunidad Valenciana
VALENCIA
CIBERER Biobank (Biobank of rare diseases)
INCLIVA - Facultad de Medicina de la Universidad de Valencia
Grupo de investigación en fisiopatología celular y orgánica del estrés oxidativo
SPAIN
Extremadura
MÉRIDA
Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeńo de Salud
Subdirector de Epidemiología
SPAIN
Galicia
SANTIAGO DE COMPOSTELA
RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial
SPAIN
Madrid
MADRID
SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Subdirección de Promoción y Prevención de la Salud
Subdirección de Promoción y Prevención de la Salud
SPAIN
Madrid
MADRID
ERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil
SPAIN
Madrid
MADRID
BioNER: Biobank of the Institute of Rare Diseases Research/Institute of Health Carlos III
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SPAIN
Madrid
MADRID
ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SPAIN
Murcia
MURCIA
SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
Región de Murcia. Consejería de Sanidad y Política Social
Servicio de Planificación y Financiación Sanitaria
SPAIN
Navarra
PAMPLONA
Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles
SPAIN
País Vasco
BARAKALDO
Basque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco
SPAIN
País Vasco
VITORIA-GASTEIZ
Rare Diseases Registry of the Basque Country
Gobierno Vasco. Departamento de Salud
Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi
UNITED KINGDOM
Cambridgeshire
CAMBRIDGE
UK10K RARE FIND - Familial Intellectual Disability variant database
Addenbrooke's Hospital
Familial Gastric Cancer - Addenbrookes
UNITED KINGDOM
Cambridgeshire
CAMBRIDGE
UK10K RARE FIND - Familial Intellectual Disability variant database
Wellcome Trust/MRC Building
Cambridge Institute for Medical Research
BELGIUM
OOST-VLAANDEREN
GENT
A biobank of patients with Primary Immune Deficiencies (PID)
PID research lab (PIRL), UZ Gent - MRBII - Entrance 38
Center for Primary Immunodeficiencies Ghent, Jeffrey Modell Foundation diagnostic and research center
BELGIUM
VLAAMS BRABANT
LEUVEN
Belgian registry of primary immunodeficiencies - contributes to the ESID European registry
UZ Leuven - Campus Gasthuisberg
Laboratory of Pediatric Immunology
BULGARIA
South-West region
SOFIA
National registry of patients with primary immunodeficiencies (PID) - BG
Alexandrovska University Hospital
FRANCE
ILE-DE-FRANCE
PARIS
CEREDIH: French primary immunodeficiencies registry
Hôpital Necker-Enfants Malades
Registre français des déficits immunitaires héréditaires
FRANCE
ILE-DE-FRANCE
PARIS
SCETIDE - Registre européen des greffes de moelle osseuse pour immunodéficience primaire
Hôpital Necker-Enfants Malades
Registre européen des greffes de moelle osseuse pour immunodéficience primaire
GERMANY
Baden-Württemberg
FREIBURG
PID-NET: German National Registry for Primary Immunodeficiencies (PID) - contributes to the ESID registry
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz
GERMANY
Baden-Württemberg
FREIBURG
ESID: European registry of primary immunodeficiencies
Universitätsklinikum Freiburg
ESID Online Datenbank
GERMANY
Baden-Württemberg
FREIBURG
PID-NET: German National Registry for Primary Immunodeficiencies (PID) - contributes to the ESID registry
Universitätsklinikum Freiburg
ESID Online Datenbank
GERMANY
Bayern
MÜNCHEN
PID-NET: Decentral National Biomaterial Bank from patients with Primary Immunodeficiency Syndromes
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Care-for-Rare Center (CRCHauner)
GERMANY
Niedersachsen
GÖTTINGEN
ESNEK - Rare paediatric neurological disease registry Germany
Universitätsmedizin Göttingen
Geschäftsstelle der ESNEK
GERMANY
Nordrhein-Westfalen
MÜNSTER
Brain-Net - brain tissue bank Munster (pediatric neuropathology)
Institut für Neuropathologie der Medizinischen Fakultät Münster
Institut für Neuropathologie
IRELAND
County Dublin
DUBLIN
National Severe Immunodeficiency Registry - contributes to ESID registry
St James's Hospital
Department of Immunology
ITALY
LIGURIA
GENOVA
ERN [RITA] - MERITA: A METADATA REGISTRY FOR THE ERN RITA
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II
POLAND
Warszawa
WARSAW
Polish registry of primary immunodeficiencies - contributes to the ESID European registry
Instytut "Pomnik-Centrum Zdrowia Dziecka"
Klinika Immunologii
PORTUGAL
NORTE
PORTO
Portuguese registry of primary immunodeficiency diseases (REPORID)
Centro Hospitalar Universitário do Porto - Hospital Santo António
Centro Coordenador do REPORID
SPAIN
Baleares
PALMA DE MALLORCA
REDIP: Spanish registry of primary immunodeficiencies - contributes to the ESID European registry
Hospital Universitario Son Espases
Servicio de Inmunología
SPAIN
Madrid
MADRID
REDAPED: Spanish registry of ataxias and degenerative spastic paraparesis
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
GERMANY
Bayern
MÜNCHEN
Neurobiobank Munique
Zentrum für Neuropathologie und Prionforschung (ZNP)
Zentrum für Neuropathologie und Prionforschung der LMU München
ITALY
LOMBARDIA
BRESCIA
Biobank IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli (BioBank FBF)
IRCCS Centro S.Giovanni di Dio - Fatebenefratelli
Biobank Service
Networks of registries and biobanks
GERMANY
Bayern
MÜNCHEN