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Registries and Biobanks
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
CRRD: Central Registry of Rare Diseases
Sciensano
Health Services Research - Rare Diseases
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)
GERMANY
Baden-Württemberg
HEIDELBERG
CERTAIN: Kooperatives Register der Europäischen Initiative für pädiatrische Nierentransplantation
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg
GERMANY
Baden-Württemberg
HEIDELBERG
ERN [ERKNet] - ERKReg: The European Rare Kidney Disease Registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg
GERMANY
Hamburg
HAMBURG
Hamburg Glomerulonephritis Registry (subproject SFB 1192: Immune-Mediated Glomerular Diseases - Basic Concepts and Clinical Implications)
UKE - Universitätsklinikum Hamburg-Eppendorf
III. Medizinische Klinik und Poliklinik
GERMANY
Sachsen
DRESDEN
Registry for C3 Glomerulopathy and Immune complex-mediated MPGN
Universitätsklinikum Carl Gustav Carus an der TU Dresden
Medizinische Klinik und Poliklinik III
ITALY
LAZIO
ROMA
RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare
ITALY
LOMBARDIA
RANICA
Biobank for rare diseases and kidney diseases
Istituto di Ricerche Farmacologiche Mario Negri
Centro Risorse Biologiche
ITALY
LOMBARDIA
RANICA
GNMP: Italian Registry of membranoproliferative glomerulonephritis
Istituto di Ricerche Farmacologiche Mario Negri
Centro di Ricerche Cliniche per le Malattie Rare
ITALY
TOSCANA
PISA
Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio
ITALY
VENETO
PADOVA
Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto
NETHERLANDS
Noord-Holland
AMSTERDAM
ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Amsterdam UMC, locatie AMC
Afdeling Klinische Informatiekunde
SPAIN
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Subdirección Técnica Asesora de Gestión de la Información
SPAIN
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria
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)
Generalitat Valenciana. Conselleria de Sanitat Universal i Salut Pública
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles
SPAIN
Extremadura
MÉRIDA
Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología
SPAIN
Galicia
SANTIAGO DE COMPOSTELA
RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Atención Hospitalaria
SPAIN
Madrid
MADRID
RePER: Rare Diseases Patient Registry
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
RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria
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
SWITZERLAND
Suisse Alémanique
BERN
Swiss Paediatric Renal Registry
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
BERN
Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)
SWITZERLAND
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
UNITED KINGDOM
West Midlands
BIRMINGHAM
RaDaR : UK National Registry of Rare Kidney Diseases
Birmingham Children's Hospital NHS Foundation Trust
Birmingham Children's Hospital
UNITED STATES
South Dakota
SIOUX FALLS
CORDS Registry: Coordination of Rare Diseases at Sanford Registry
Sanford Research
Standford Research
BELGIUM
OOST-VLAANDEREN
GENT
I-DSD: International Disorders of Sex Development registry - BE - Flanders contribution (Ghent university hospital)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team] - UZ Gent
CANADA
Colombie-Britannique
VANCOUVER
Glomerulonephritis Registry
Centre for Health Evaluation and Outcome Sciences (CHEOS)
Department of Nephrology
FRANCE
ILE-DE-FRANCE
PARIS
RaDiCo-EURBIO-Alport: Study of the natural history of Alport Syndrome by establishment of an international database
Hôpital Necker-Enfants Malades
Service de Néphrologie-Dialyse Adulte
FRANCE
ILE-DE-FRANCE
PARIS
RaDiCo-EURBIO-Alport: Study of the natural history of Alport Syndrome by establishment of an international database
Hôpital Necker-Enfants Malades
Service de néphrologie pédiatrique
GERMANY
Nordrhein-Westfalen
KÖLN
The FOrMe Registry : The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry
Universitätsklinikum Köln
Klinik II für Innere Medizin - Nephrologie, Rheumatologie, Diabetologie und allgemeine Innere Medizin
IRELAND
County Dublin
DUBLIN
Epidermolysis Bullosa Registry Ireland
Charles Institute of Dermatology
National and International Skin Registry Solutions
ITALY
LOMBARDIA
PAVIA
Italian registry for MYH9-related thrombocytopenia
Fondazione IRCCS Policlinico San Matteo
Clinica Medica III
ITALY
TOSCANA
SIENA
Genetic Biobank of Siena
Azienda Ospedaliero Universitaria Senese - Policlinico Santa Maria alle Scotte
U.O.C. di Genetica Medica
ITALY
TOSCANA
SIENA
Italian registry of Alport syndrome
Azienda Ospedaliero Universitaria Senese - Policlinico Santa Maria alle Scotte
U.O.C. di Genetica Medica
NETHERLANDS
Gelderland
NIJMEGEN
Membranous Nephropathy Registry
Radboudumc - Radboud universitair medisch centrum
Afdeling Nierziekten
SPAIN
Madrid
MADRID
ERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil
SWEDEN
Region Skåne
LUND
SMARCAL1base: Mutation registry for Schimke immuno-osseous dysplasia
Lunds Universitet
Department of Experimental Medical Science
AUSTRIA
TIROL
INNSBRUCK
Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection
Medizinische Universität Innsbruck
Universitätsklinik für Innere Medizin II
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
BSSC: The Belgian Systemic Sclerosis Cohort
Cliniques Universitaires de Bruxelles - Hôpital Erasme
Department of Internal Medicine/Médecine interne
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
BSSC: The Belgian Systemic Sclerosis Cohort
Cliniques universitaires Saint-Luc - UCLouvain
Service de rhumatologie
BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
BSSC: The Belgian Systemic Sclerosis Cohort
Cliniques universitaires Saint-Luc - UCLouvain
Centre multidisciplinaire de prise en charge de la sclérodermie
BELGIUM
OOST-VLAANDEREN
GENT
BSSC: The Belgian Systemic Sclerosis Cohort
Ghent University Hospital - UZ Gent
Gentse Universitaire Scleroderma Unit (GUSU)
BELGIUM
VLAAMS BRABANT
LEUVEN
BSSC: The Belgian Systemic Sclerosis Cohort
UZ Leuven - Campus Gasthuisberg
Department of Rheumatology/Dienst Reumatologie
FRANCE
ILE-DE-FRANCE
LE KREMLIN-BICÊTRE
Establishment of children and adolescents cohort in Behcet disease in France
APHP. Université Paris-Saclay, Hôpital Bicêtre
Service de Rhumatologie pédiatrique
FRANCE
ILE-DE-FRANCE
LE KREMLIN-BICÊTRE
DNA bank for child's Behcet disease in France
APHP. Université Paris-Saclay, Hôpital Bicêtre
Service de Rhumatologie pédiatrique
FRANCE
ILE-DE-FRANCE
PARIS
RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
AP-HP.Sorbonne Université - Hôpital de la Pitié-Salpêtrière
Service de rhumatologie
FRANCE
ILE-DE-FRANCE
PARIS
MATHEC-SFGM-TC registry
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Unité de Médecine Interne (UF 04): CRMR MATHEC, Maladies Auto-immunes et Thérapie Cellulaire
FRANCE
ILE-DE-FRANCE
PARIS
Biological collection in sarcoidosis in France
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie
FRANCE
ILE-DE-FRANCE
PARIS
RaDiCo-ACOSTILL: National cohort on adult and childhood onset Still disease
Groupe hospitalier AP-HP.6 - Hôpital Tenon
Service de médecine interne
GERMANY
Baden-Württemberg
HEIDELBERG
PODONET: Registry for Steroid-Resistant Nephrotic Syndrome (SRNS) patients
Zentrum für Kinder- und Jugendmedizin des Universitätsklinikums Heidelberg
Klinik für Kinderheilkunde I - Sektion Pädiatrische Nephrologie
GERMANY
Bayern
MÜNCHEN
MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
GERMANY
Hessen
GIEßEN
Giessen PNEUMObank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen
GERMANY
Nordrhein-Westfalen
KÖLN
Patient registry of the German Network for Systemic Scleroderma
Universitätsklinikum Köln
Koordinierungszentrale des DNSS
GERMANY
Sachsen-Anhalt
DESSAU
German registry for Morbus Adamantiades-Behçet e.V.
Städtisches Klinikum Dessau
Deutsches Register Morbus Adamantiades-Behçet e.V.
GERMANY
Schleswig-Holstein
BORSTEL
BMB Nord: BioMaterialBank Nord
Forschungszentrum Borstel Leibniz Lungenzentrum
GERMANY
Schleswig-Holstein
KIEL
POPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie
ITALY
CALABRIA
CATANZARO
Behçet's disease Italian registry
Azienda Ospedaliera Universitaria "Mater Domini"
Ambulatorio di Reumatologia e Immunologia Pediatrica
ITALY
LAZIO
ROMA
FMF: Italian registry for familial mediterranean fever in the young
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Centro delle Febbri Periodiche - Istituto di Medicina Interna
ITALY
LAZIO
ROMA
Italian Registry of adult patients affected by familial mediterranean fever
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Centro delle Febbri Periodiche - Istituto di Medicina Interna
ITALY
LOMBARDIA
RANICA
SNRS: Registry of steroid-resistant nephrotic syndrome
Istituto di Ricerche Farmacologiche Mario Negri
Centro di Ricerche Cliniche per le Malattie Rare
NETHERLANDS
Utrecht
NIEUWEGEIN
Biobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum
SPAIN
Madrid
MADRID
aHUS/C3G: Database of Thrombotic Microangiopathies related with the Complement System and C3 Glomerulophaty
Centro de Investigaciones Biológicas (CSIC)
Departamento de Biomedicina Molecular
UNITED KINGDOM
Greater London
LONDON
Juvenile Dermatomyositis Cohort Biomarker Study and Repository
GOSH NHS Foundatin Trust
Rheumatology Unit
UNITED KINGDOM
Greater London
LONDON
Juvenile Dermatomyositis Cohort Biomarker Study and Repository
Institute of Child Health
Juvenile Dermatomyositis Cohort Biomarker Study & Repository
UNITED KINGDOM
Greater London
LONDON
Juvenile Dermatomyositis Cohort Biomarker Study and Repository
The Institute of Child Health & The Division of Medicine, UCL
The Institute of Child Health & The Division of Medicine
UNITED KINGDOM
Merseyside
LIVERPOOL
Juvenile Dermatomyositis Cohort Biomarker Study and Repository
Alder Hey Children's Hospital
Department of Rheumatology
FRANCE
ILE-DE-FRANCE
PARIS
French auto-immunity and Rituximab (AIR) registry: prospective study of patients treated with Rituximab
AP-HP.Centre - Université de Paris - Hôpital Cochin
Unité fonctionnelle de Médecine interne et centre de référence maladies rares
GERMANY
Baden-Württemberg
FREIBURG
PSHN Registry - Purpura Schoenlein-Henoch-Nephritis registry of the German society for paediatric nephrology (GPN)
Zentrum für Kinder- und Jugendmedizin Freiburg
Sektion Kindernephrologie der Klinik für Allgemeine Kinder- und Jugendmedizin
GERMANY
Niedersachsen
HANNOVER
Lupus Nephritis Registry of the German Society of Paediatric Nephrology
Medizinische Hochschule Hannover
Klinik für Pädiatrische Nieren-, Leber- und Stoffwechselerkrankungen
IRELAND
County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
St James's Hospital
Trinity Health Kidney Centre - Trinity College Dublin
IRELAND
County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
Tallaght University Hospital
Trinity Health Kidney Centre
SPAIN
Baleares
PALMA DE MALLORCA
RERIB: Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Consejería de Salud y Consumo
Servicio de Epidemiología
SPAIN
Canarias
LAS PALMAS DE GRAN CANARIA
Spanish Rheumatology Society Lupus Registry
Hospital Universitario de Gran Canaria Dr. Negrín
Servicio de Reumatología
SPAIN
Madrid
MADRID
SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Direccion General de Salud Publica
Subdirección General de Vigilancia en Salud Pública
SPAIN
Madrid
MADRID
Spanish Rheumatology Society Lupus Registry
Sociedad Española de Reumatología
Fundación Española de Reumatología
SWEDEN
Region Stockholm
SOLNA
IRBIS: International registry for biologics in systemic lupus erythematosus
Karolinska Institutet
Department of Medicine, Solna (MedS)
SWITZERLAND
Suisse Alémanique
BASEL
Swiss SLE Cohort Study
Universitätsspital Basel
Association of the Swiss SLE Cohort Study (ASSCS)
Networks of registries and biobanks
MALTA
MALTA
MALTA
EuroBioBank: European Network of DNA, Cell and Tissue banks for rare diseases
Universita ta Malta
Molecular Genetics Laboratory
FRANCE
ILE-DE-FRANCE
PARIS
ImmunAID Cohort: Cohort of patients with rare systemic auto-inflammatory diseases
AP-HP.Sorbonne Université - Hôpital de la Pitié-Salpêtrière
Service de rhumatologie
ITALY
LIGURIA
GENOVA
EUROFEVER: PReS European network of registries for autoinflammatory diseases in childhood
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie
UNITED KINGDOM
Greater London
LONDON