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Funded by an IRDiRC member =

Registries and Biobanks

GERMANY

Baden-Württemberg
TÜBINGEN

Neutropenie-Zellbank - Eingebunden in das SCN international registry (SCNIR)
Universitätsklinik für Kinder- und Jugendmedizin Tübingen
Abteilung für allgemeine Pädiatrie, Hämatologie/Onkologie

GERMANY

Niedersachsen
HANNOVER

AUSTRIA

TIROL
INNSBRUCK

Austrian registry for inborn errors of metabolism
Medizinische Universität Innsbruck
Pädiatrie I

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 center
Tartu University Hospital
Centre of Genetics - United laboratories

GERMANY

Baden-Württemberg
REUTLINGEN

RAMEDIS : Rare Metabolic Diseases Database
Klinikum am Steinenberg
Klinik für Kinder- und Jugendmedizin

GERMANY

Baden-Württemberg
REUTLINGEN

RAMEDIS : Rare Metabolic Diseases mutation Database
Klinikum am Steinenberg
Klinik für Kinder- und Jugendmedizin

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

NETHERLANDS

Noord-Holland
AMSTERDAM

Biobank Inherited Metabolic Disorders (blood/urine/liquor/fibroblasts)
AMC - Academisch Medisch Centrum
Afdeling Endocrinologie en Metabolisme

NETHERLANDS

Utrecht
UTRECHT

DDRMD - Dutch Diagnosis Registration Metabolic Diseases
UMC Utrecht - Universitair Medisch Centrum Utrecht
Afdeling Metabole Ziekten

SPAIN

Comunidad Valenciana
VALENCIA

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian registry of primary immunodeficiencies - contributes to the ESID European registry
Erasme Hospital - ULB
Unité de traitment des immunodeficiences

BELGIUM

OOST-VLAANDEREN
GENT

Tissue samples of patients with primary immune deficiencies
Ghent University Hospital - UZGent
Center for Primary Immunodeficiencies Ghent, JMF diagnostic and research center

BELGIUM

VLAAMS BRABANT
LEUVEN

Belgian registry of primary immunodeficiencies - contributes to the ESID European registry
University Hospitals Leuven - Gasthuisberg
Laboratory for Experimental Immunology

BULGARIA

 South-West region
SOFIA

FRANCE

ILE-DE-FRANCE
PARIS

CEREDIH: French primary immunodeficiencies registry
CHU Paris - 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
CHU Paris - Hôpital Necker-Enfants Malades
Registre européen des greffes de moelle osseuse pour immunodéficience primaire

GERMANY

Baden-Württemberg
FREIBURG

Funded by an IRDiRC memberPID-NET: German National Registry for Primary Immunodeficiencies (PID)
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

Funded by an IRDiRC memberPID-NET: German National Registry for Primary Immunodeficiencies (PID)
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)

IRELAND

County Dublin
DUBLIN

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 do Porto - Hospital Santo António
Centro Coordenador do REPORID

SPAIN

Baleares
PALMA DE MALLORCA

Networks of registries and biobanks

GERMANY

Niedersachsen
HANNOVER

BMFS: Network for Congenital Bone Marrow Failure Syndromes (patient registry)
  • Medizinische Hochschule Hannover
  • Koordinationsstelle des Netzwerkes für angeborene Störungen der Blutbildung
  • ITALY

    LIGURIA
    GENOVA

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