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Funded by an IRDiRC member = Member of a ERN =
Registries and Biobanks

Colombie-Britannique
VANCOUVER
Glomerulonephritis Registry
Centre for Health Evaluation and Outcome Sciences (CHEOS)
Department of Nephrology

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
CRRD: Central Registry of Rare Diseases
Sciensano
Health Services Research - Rare Diseases

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

Berlin
BERLIN
Core documentation of children and adolescens with rheumatic diseases
Deutsches Rheuma-Forschungszentrum Berlin
Forschungsbereich Epidemiologie

Schleswig-Holstein
LÜBECK
GeVas: German Vasculitis Registry
Universitätsklinikum Schleswig-Holstein - Campus Lübeck
Klinik für Rheumatologie und Klinische Immunologie

County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
St James's Hospital
Trinity Health Kidney Centre - Trinity College Dublin

County Dublin
DUBLIN
The Irish Rare Kidney Disease Registry and Biobank
Tallaght University Hospital
Trinity Health Kidney Centre

LAZIO
ROMA
RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare

TOSCANA
PISA
Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio

VENETO
PADOVA
Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto

Noord-Holland
AMSTERDAM
Biobank Inflammatory Neuromuscular Diseases (serum/peripheral bood cells/RNA/tissue/CSF)
Amsterdam UMC, locatie AMC
Afdeling Neurologie

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

Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria

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

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

Extremadura
MÉRIDA
Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología

Galicia
SANTIAGO DE COMPOSTELA
RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Atención Hospitalaria

Madrid
MADRID
ERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

Madrid
MADRID
RePER: Rare Diseases Patient Registry
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

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

Navarra
PAMPLONA
RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria

País Vasco
BARAKALDO
Basque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco

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

Greater London
LONDON
UKIVAS Registry : UK and Ireland Vasculitis registry
Royal Free London Hospital
University College London, Centre for Nephrology

Oxfordshire
OXFORD
UKIVAS Registry : UK and Ireland Vasculitis registry
Nuffield Orthopaedic Centre
Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences

South Dakota
SIOUX FALLS
CORDS Registry: Coordination of Rare Diseases at Sanford Registry
Sanford Research
Standford Research

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)

ILE-DE-FRANCE
PARIS
ERN [VASCERN] - VASCERN Registries
CHU Paris Nord-Val de Seine - Hôpital Xavier Bichat-Claude Bernard
Service de cardiologie

LIGURIA
GENOVA
ERN [RITA] - MERITA: A METADATA REGISTRY FOR THE ERN RITA
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II

Suisse Alémanique
BERN
Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)

Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten

Baden-Württemberg
HEIDELBERG
CERTAIN: Kooperatives Register der Europäischen Initiative für pädiatrische Nierentransplantation
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

Baden-Württemberg
HEIDELBERG
ERN [ERKNet] - ERKReg: The European Rare Kidney Disease Registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

Noord-Holland
AMSTERDAM
ESPN/ERA-EDTA Registry: European Registry for Children on Renal Replacement Therapy
Amsterdam UMC, locatie AMC
Afdeling Klinische Informatiekunde

Utrecht
NIEUWEGEIN
Biobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum

West Midlands
BIRMINGHAM
RaDaR : UK National Registry of Rare Kidney Diseases
Birmingham Children's Hospital NHS Foundation Trust
Birmingham Children's Hospital

STEIERMARK
GRAZ
Clinical Database for the Early Recognition of Pulmonary Parenchymal Involvement in Patients With Systemic Diseases Bearing a Risk for Interstitial Lung Disease
Medizinische Universität Graz
Klinische Abteilung für Pulmonologie

ILE-DE-FRANCE
PARIS
RaDiCo-PID: National cohort on Idiopathic Interstitial Pneumonia from infancy to elderly
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
Service de pneumologie pédiatrique

Hessen
GIEßEN
eurILDreg: European ILD Registry and Biobank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen

EMILIA ROMAGNA
BOLOGNA
RIPID - Italian registry of diffuse infiltrative pneumopathies
IRCCS Policlinico Sant'Orsola
U.O. Pneumologia e Terapia Intensiva Respiratoria

Lothian
EDINBURGH
ChILD-EU Database and Observational Study; European Management Platform for Childhood Interstitial Lung Diseases
Royal Hospital for Sick Children
Department of Respiratory, Sleep & General Medicine
Networks of registries and biobanks

MALTA
MALTA
EuroBioBank: European Network of DNA, Cell and Tissue banks for rare diseases
Universita ta Malta
Molecular Genetics Laboratory

Suisse Romande
LAUSANNE