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Gefinancierd door een IRDiRC-lid =

Registers en biobanken

ITALIË

SICILIA
PALERMO

Sicilian Registry of Thalassemia and Hemoglobinopathies (Re.S.T.E.)
Ossevatorio Epidemiologico dell Assessorato regionale

BULGARIJE

 South Central region
PLOVDIV

National registry of patients with thalassaemia major - BG
BAPES - Bulgarian Association for Promotion of Education and Science
Information Centre for Rare Diseases and Orphan Drugs

FRANKRIJK

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

French certified registry of patients affected by thalassemia
CHU de Marseille - Hôpital de la Timone
Laboratoire de génétique moléculaire

NEDERLAND

Gelderland
NIJMEGEN

Radboud Biobank - IJzerbiobank (cellijnen, DNA, serum en urine)
Radboudumc - Radboud universitair medisch centrum
Translationeel Metabool Laboratorium

AUSTRALIË

Victoria
MEKBOURNE

Haemoglobinopathy Registry
Monash University
Department of Epidemiology & Preventive Medicine

BELGIË

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Haemoglobinopathies - database
Erasme Hospital - ULB
Centre de génétique humaine - ULB

BELGIË

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Haemoglobinopathies - database
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

GRIEKENLAND

GREECE
ATHENS

National Registry for Haemoglobinopathies in Greece (NRHG)
Laiko General Hospital
Thalassaemia Centre

NEDERLAND

Zuid-Holland
LEIDEN

Biobank Hemoglobinopathie (DNA)
LUMC - Leids Universitair Medisch Centrum
Afdeling Klinische Genetica

SPANJE

Madrid
MADRID

REPHem-SEHOP: Paediatric Haemoglobinopathies Spanish Registry
Hospital General Universitario Gregorio Marañón
Registro Español Pediátrico de Hemoglobinopatías

VERENIGD KONINKRIJK

Greater London
LONDON

EHR: European Haemoglobinopathy Registry
North West London Hospitals NHS - Central Middlesex Hospital
Middlesex Sickle Cell & Thalassaemia Centre

VERENIGD KONINKRIJK

Greater London
LONDON

NHR: National Haemoglobinopathy Registry
North West London Hospitals NHS - Central Middlesex Hospital
Brent Sickle Cell & Thalassaemia Centre

FRANKRIJK

ILE-DE-FRANCE
PARIS

French constitutive hematologic diseases registry
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service d'hématologie pédiatrique

BELGIË

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Central Registry of Rare Diseases (CRRD)
Sciensano
Health Services Research - Rare Diseases

FINLAND

Finland
HELSINKI

Finnish Hematology Register and Biobank - FHRB
HUCH - Helsinki University Central Hospital
Hematology Clinic

FRANKRIJK

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)

SPANJE

Cataluña
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

DENEMARKEN

Sjælland
COPENHAGEN

Mendelian cytogenetics network online database
The Panum Institute-University of Copenhagen
Department of Cellular and Molecular Medicine

ESTLAND

Tartu
TARTU

Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre

ITALIË

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

ITALIË

LIGURIA
GENOVA

Gefinancierd door een IRDiRC-lidTelethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche

MAROKKO

Rabat
RABAT

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

OOSTENRIJK

TIROL
INNSBRUCK

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

SPANJE

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

SPANJE

Comunidad Valenciana
VALENCIA

CIBERER Biobank (Biobank of rare diseases)
INCLIVA
Grupo de investigación en Fisiopatología celular y orgánica del estrés oxidativo

SPANJE

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

SPANJE

País Vasco
BARAKALDO

Gefinancierd door een IRDiRC-lidBasque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco

ZUID-KOREA

KOREA, REPUBLIC OF
SEOUL

Gefinancierd door een IRDiRC-lidKorean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory

Netwerken van registers en biobanken

SPANJE

Madrid
MADRID

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

    LIGURIA
    GENOVA

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