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Funded by an IRDiRC member =

Registries and Biobanks

HUNGARY

Dél-Dunántúl
PECS

Tuberous sclerosis biobank
Clinical Center - University of Pécs
Department of Medical Genetics

NETHERLANDS

Zuid-Holland
ROTTERDAM

ENCORE Biobank for Neurodevelopmental Disorders (blood/saliva/skin biopsies)
Erasmus MC - Erasmus Medisch Centrum
Afdeling Neurowetenschappen

UNITED KINGDOM

East Sussex
BRIGHTON

TuberOus SClerosis registry to increase disease Awareness (TOSCA)
Royal Sussex County Hospital
Sussex Kidney Unit

GERMANY

Baden-Württemberg
TÜBINGEN

STEP Registry: Registry for rare tumors in children and adolescents
Universitätsklinik für Kinder- und Jugendmedizin Tübingen
Abteilung für allgemeine Pädiatrie, Hämatologie/Onkologie

GERMANY

Niedersachsen
HANNOVER

Funded by an IRDiRC memberNEOCYST: Biobank Early Onset Cystic Kidney Disease
CRC Hannover
Hannover Unified Biobank (HUB)

GERMANY

Nordrhein-Westfalen
DORTMUND

STEP Registry: Registry for rare tumors in children and adolescents
Klinikum Dortmund gGmbH - Klinikzentrum Mitte
Klinik für Kinder- und Jugendmedizin

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)

BELGIUM

ANTWERPEN
ANTWERPEN

Collection of FRA12A carrier DNA samples
University of Antwerp - UA
Medical Genetics Unit

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

ENRAH: European alternating hemiplegia and rare epilepsies registry in childhood
Secretariat Brussels, Postbus 10009
European Network for Research on Alternating Hemiplegia

FRANCE

GRAND-EST
ILLKIRCH-GRAFFENSTADEN

Funded by an IRDiRC memberInternational 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

Funded by an IRDiRC memberNational cohort for the evaluation of individual burden in the course of rare skin diseases
CHU Paris - Hôpital Necker-Enfants Malades
Centre MAGEC (MAladies rares Génétiques ŕ Expression Cutanée)

GERMANY

Baden-Württemberg
HEIDELBERG

Cooperative European Paediatric Renal Transplant Initiative registry
Universitätsmedizin Heidelberg
Zentrum für Seltene Erkrankungen (ZSE) Heidelberg

GERMANY

Bayern
ERLANGEN

EEBB: European Epilepsy Brain Bank
Universitätsklinikum Erlangen - Kopfkliniken
Neuropathologisches Institut

GERMANY

Bayern
ERLANGEN

German epilepsy registry
Universitätsklinikum Erlangen - Kopfkliniken
Neuropathologisches Institut

GERMANY

Nordrhein-Westfalen
BONN

Brain-Net - brain tissue bank Bonn (epilepsy, brain tumor)
Universitätsklinikum Bonn
Hirntumor-Referenzzentrum der DGNN

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

SPAIN

Cataluńa
BARCELONA

Spanish registry of renal hereditary diseases
Fundació Puigvert
Servicio de Nefrología

UNITED KINGDOM

Avon
BRISTOL

UK renal rare disease biobank
Southmead Hospital
Academic Renal Unit

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UK10K RARE FIND - Familial Intellectual Disability variant database
Addenbrooke's Hospital
Level 6, Addenbrooke's Treatment Centre

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

UK10K RARE FIND - Familial Intellectual Disability variant database
Wellcome Trust/MRC Building
Cambridge Institute for Medical Research

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

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

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

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'Hygične
Département de génétique médicale

SPAIN

Madrid
MADRID

CIBERER Biobank (Biobank of rare diseases)
ISCIII - Instituto de Salud Carlos III
Centro de Investigación Biomédica en Red de Enfermedades Raras

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

GERMANY

Bayern
MÜNCHEN

Brain-Net Germany : National network of brain banks in Germany
  • Zentrum für Neuropathologie und Prionforschung (ZNP)
  • Zentrum für Neuropathologie und Prionforschung der LMU München
  • ITALY

    LIGURIA
    GENOVA

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