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Funded by an IRDiRC member =

Registries and Biobanks

FRANCE

ILE-DE-FRANCE
LE KREMLIN-BICÊTRE

Funded by an IRDiRC memberRaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
CHU Paris-Sud - Hôpital de Bicêtre
Service d'Endocrinologie et Diabète de l'Enfant

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberRaDiCo-IDMet: National and European cohort on Imprinting Disorders and their metabolic consequences
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service Explorations fonctionnelles

POLAND

Lublin
LUBLIN

Polish Registry of Inherited Tubulopathies (POLtube)
Uniwersytecki Szpital Dzieciecy w Lublinie
Klinika Nefrologii Dzieciecej

POLAND

Poznan
POZNAN

Polish Registry of Inherited Tubulopathies (POLtube)
Specjalistyczny Zespol Opieki Zdrowotnej nad Matka i Dzieckiem
Poradnia Nefrologiczna

SPAIN

Asturias
OVIEDO

RenalTube: Database of patients with primary tubulopathies
Hospital Universitario Central de Asturias
Servicio de Pediatría

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
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: Cooperative European Paediatric Renal Transplant Initiative registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

GERMANY

Baden-Württemberg
HEIDELBERG

Funded by an IRDiRC memberERN [ERKNet] - ERK-REG: ERKNet Registry for Rare Kidney Diseases
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

NETHERLANDS

Noord-Holland
AMSTERDAM

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

UNITED KINGDOM

Avon
BRISTOL

UK renal rare disease biobank
Southmead Hospital
Academic Renal Unit

UNITED KINGDOM

West Midlands
BIRMINGHAM

UK Renal Rare Disease Registry (RaDaR) - Part of OXAL Europe
Birmingham Children's Hospital NHS Foundation Trust
Birmingham Children's Hospital

AUSTRIA

TIROL
INNSBRUCK

Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck

DENMARK

Sjælland
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

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberERN [Endo-ERN] - EuRRECa: European Registries for Rare Endocrine Conditions
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Délégation à la Recherche Clinique et à l'Innovation de l'AP-HP

ITALY

LIGURIA
GENOVA

Cell line and DNA Biobank from patients affected by genetic diseases
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche

ITALY

LIGURIA
GENOVA

Funded by an IRDiRC memberTelethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche

KOREA, REPUBLIC OF

KOREA, REPUBLIC OF
SEOUL

Funded by an IRDiRC memberKorean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory

MOROCCO

Rabat
RABAT

Moroccan National Genetic Database
Institut National d'Hygiène
Département de génétique médicale

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
Grupo de investigación en Fisiopatología celular y orgánica del estrés oxidativo

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

País Vasco
BARAKALDO

Funded by an IRDiRC memberBasque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco

Networks of registries and biobanks

ITALY

LIGURIA
GENOVA

TELETHON NETWORK OF GENETIC BIOBANKS
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • Centro di diagnostica genetica e biochimica delle malattie metaboliche