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Funded by an IRDiRC member =

Registries and Biobanks

BELGIUM

OOST-VLAANDEREN
GENT

A biobank of patients with Primary Immune Deficiencies (PID)
PID research lab (PIRL), UZ Gent - MRBII - Entrance 38
Center for Primary Immunodeficiencies Ghent, Jeffrey Modell Foundation diagnostic and research center

BELGIUM

VLAAMS BRABANT
LEUVEN

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

BULGARIA

 South-West region
SOFIA

FRANCE

ILE-DE-FRANCE
PARIS

CEREDIH: French primary immunodeficiencies registry
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
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 Universitário do Porto - Hospital Santo António
Centro Coordenador do REPORID

SPAIN

Baleares
PALMA DE MALLORCA

AUSTRIA

TIROL
INNSBRUCK

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases

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

FRANCE

ILE-DE-FRANCE
LE KREMLIN-BICĘTRE

French cohort for auto-inflammatory diseases
CHU Paris-Sud - Hôpital de Bicętre
Service de Rhumatologie pédiatrique

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)

FRANCE

OCCITANIE
MONTPELLIER

Infevers : The registry of Hereditary Auto-inflammatory Disorders Mutations
CHU de Montpellier - Hôpital Arnaud de Villeneuve
Laboratoire de génétique des maladies rares et autoinflammatoires

GERMANY

Nordrhein-Westfalen
KREFELD

Funded by an IRDiRC memberGerman AID (Autoinflammatory disorders) registry - subproject AID-NET
HELIOS Klinikum Krefeld
Zentrum für Kinder- und Jugendmedizin

GERMANY

Nordrhein-Westfalen
MÜNSTER

Funded by an IRDiRC memberAID-NET : Biobank (DNA/RNA/serum) for autoinflammatory syndromes
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Pädiatrische Rheumatologie und Immunologie

ITALY

LIGURIA
GENOVA

EUROFEVER: European registry for autoinflammatory diseases
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie

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

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

AUSTRIA

TIROL
INNSBRUCK

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

GERMANY

Baden-Württemberg
HEIDELBERG

Funded by an IRDiRC memberERN [MetabERN] - UIMD: Unified European Registry for Inherited Metabolic DisordersUIMD: Unified European Registry for Inherited Metabolic Disorders
Zentrum für Kinder- und Jugendmedizin - Angelika-Lautenschläger-Klinik
Klinik für Kinderheilkunde I - Sektion für Neuropädiatrie und Stoffwechselmedizin

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

NETHERLANDS

Utrecht
UTRECHT

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

SPAIN

Cataluńa
ESPLUGUES DE LLOBREGAT

Biobank of the Sant Joan de Déu Children's Hospital for Research (BHISJDI)
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco del Hospital Infantil Sant Joan de Déu para la investigación

GERMANY

Berlin
BERLIN

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

SWITZERLAND

Suisse Romande
ETOY

Juvenile Inflammatory Rheumatism Cohorte (JIRcohorte)
Fondation rhumatismes-enfants-suisse

SWITZERLAND

Suisse Romande
LAUSANNE

Juvenile Inflammatory Rheumatism Cohorte (JIRcohorte)
Centre Hospitalier Universitaire Vaudois CHUV
URIRP - Unité Romande d'Immuno-Rhumatologie Pédiatrique

Networks of registries and biobanks

ITALY

LIGURIA
GENOVA

EUROFEVER: PReS European network of registries for autoinflammatoy diseases in childhood
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie
  • ITALY

    LIGURIA
    GENOVA

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

    Madrid
    MADRID

    SpainRDR: Spanish Rare Disease Registries Research Network (patient registries)
  • ISCIII - Instituto de Salud Carlos III
  • Instituto de Investigación de Enfermedades Raras