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Funded by an IRDiRC member =

Registries and Biobanks

FINLAND

Finland
TAMPERE

ELA2base: Mutation registry for Cyclic and congenital neutropenia
University of Tampere
Institute of Biomedical Technology

FINLAND

Finland
TAMPERE

GFI1base: Mutation registry for SCN and NI-CINA
University of Tampere
Institute of Biomedical Technology

AUSTRIA

OBERÖSTERREICH
LINZ

Austrian severe chronic neutropenia patient registry - contributes to the SCN international registry (SCNIR)
Kepler Universitätsklinikum - Med Campus IV.
Zentrum für Medizinische Genetik

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian severe chronic neutropenia patient registry - contributes to the SCN international registry (SCNIR)
Cliniques Universitaires UCL de Saint Luc - UCLStLuc
Department of Pediatric Hematology

BELGIUM

WEST-VLAANDEREN
BRUGGE

CZECH REPUBLIC

Hradec Kralove
HRADEC KRÁLOVÉ

Czech severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Fakultní nemocnice Hradec Králové - CHU Hradec Králové
Oddeleni klinicke hematolgie - Department of clinical hematology

FRANCE

ILE-DE-FRANCE
PARIS

French severe chronic neutropenia certified patient registry - contributes to the SCN international registry (SCNIR)
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service d'hématologie-immuno-oncologie pédiatrique

GERMANY

Niedersachsen
HANNOVER

Funded by an IRDiRC memberSCNIR: neutropenia cell bank
Medizinische Hochschule Hannover
SCNIR - Europazentrale

GREECE

ATTIKI
ATHENS

HUNGARY

Közép-Magyarország
DEBRECEN

Hungarian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
University of Debrecen
Department of children immunology and infectology

IRELAND

County Dublin
DUBLIN

ISRAEL

ISRAEL
PETAH TIKVA

Israelian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Schneider Children's Medical Center of Israel
Pediatric Hematology Unit

ITALY

TOSCANA
FIRENZE

SCNIR: Italian severe chronic neutropenia registry - contributes to the SCN international registry
Azienda Ospedaliera Universitaria Anna Meyer
D.A.I. Oncoematologia

NETHERLANDS

Utrecht
UTRECHT

Dutch severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
UMC Utrecht - Universitair Medisch Centrum Utrecht
Polikliniek Hematologie

NORWAY

Řstlandet
OSLO

POLAND

Wroclaw
WROCLAW

Polish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Ponadregionalne Centrum Onkologii Dzieciecej PRZYLADEK NADZIEI
Klinika Transplantacji Szpiku, Onkologii i Hematologii Dzieciecej

PORTUGAL

CENTRO
COIMBRA

SERBIA

Serbia
BELGRADE

SPAIN

Cataluńa
BARCELONA

Spanish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Hospital Universitari Vall d'Hebron - Area Materno Infantil
Servicio de Oncología y Hematología Pediátricas

SWEDEN

Stockholms läns landsting
HUDDINGE

TURKEY

TURKEY
ANKARA

Turkish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Ankara University - Faculty of medicine
Department of Pediatric Immunology-Allergy

UNITED KINGDOM

Greater London
LONDON

English severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Great Ormond Street Hospital for Children, NHS Foundation Trust
Haematology and oncology department

UNITED KINGDOM

West Yorkshire
LEEDS

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

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

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 center
Tartu University Hospital
Centre of Genetics - United laboratories

ITALY

LIGURIA
GENOVA

Cell line and DNA Biobank from patients affected by genetic diseases
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Laboratorio di Diagnosi Pre-Postnatale Malattie Metaboliche

ITALY

LIGURIA
GENOVA

Funded by an IRDiRC memberTelethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Laboratorio di Diagnosi Pre-Postnatale 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

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

Niedersachsen
HANNOVER

SCNIR: Severe Chronic Neutropenia International Registry
  • Medizinische Hochschule Hannover
  • SCNIR - Europazentrale
  • 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
  • Laboratorio di Diagnosi Pre-Postnatale Malattie Metaboliche