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Financé par un membre IRDiRC = Membre d'un ERN =

Registres et biobanques

ALLEMAGNE

Baden-Württemberg
FREIBURG

Hilda biobank for children at the University Medical Center Freiburg - diagnostic and research on biomaterials of children and adolescents
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie

ALLEMAGNE

Baden-Württemberg
FREIBURG

Registry of the European Working Group (EWOG) for Severe Aplastic Anemia (SAA) in children and adolescents
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie

ALLEMAGNE

Baden-Württemberg
TÜBINGEN

Neutropenia biobank - contributes to the SCN international registry (SCNIR)
Universitätsklinik für Kinder- und Jugendmedizin Tübingen
Abteilung für allgemeine Pädiatrie, Hämatologie/Onkologie

ALLEMAGNE

Baden-Württemberg
ULM

OSTEOPETR: International registry of patients suffering from osteopetrosis
Klinik für Kinder- und Jugendmedizin des Universitätsklinikums Ulm
Sektion Knochenmark- und Stammzelltransplantation

ALLEMAGNE

Niedersachsen
HANNOVER

ALLEMAGNE

Nordrhein-Westfalen
KÖLN

Tumor bank for embryonal tumors
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

ALLEMAGNE

Rheinland-Pfalz
MAINZ

German mucopolysaccharidosis patient registry
Universitätsmedizin Mainz
Villa Metabolica - Schwerpunktbereich angeborene Stoffwechselerkrankungen

ALLEMAGNE

Schleswig-Holstein
KIEL

German Lymph Node Registry - tumor bank
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Sektion Hämatopathologie und Lymphknotenregister am Institut für Pathologie

AUSTRALIE

Victoria
MEKBOURNE

Haemoglobinopathy Registry
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIE

Victoria
MEKBOURNE

Aplastic Anaemia Registry (AAR)
Monash University
Department of Epidemiology & Preventive Medicine

AUTRICHE

WIEN
WIEN

Austrian Bone Marrow Donor Registry
Österreichische Knochenmarkspendezentrale
Fonds Österreichisches Stammzellregister

BELGIQUE

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

BELGIQUE

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

ESPAGNE

Andalucía
SEVILLA

Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Dirección General de Calidad, Investigación y Gestión del Conocimiento

ESPAGNE

Aragón
ZARAGOZA

Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria

ESPAGNE

Baleares
PALMA DE MALLORCA

Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Servicio de Epidemiología

ESPAGNE

Baleares
PALMA DE MALLORCA

Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Dirección General de Salud Pública y Consumo

ESPAGNE

Cantabria
SANTANDER

Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Gobierno de Cantabria. Consejería de Sanidad y Servicios Sociales
Servicio de Atención Sanitaria

ESPAGNE

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras

ESPAGNE

Extremadura
MÉRIDA

Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeńo de Salud
Subdirector de Epidemiología

ESPAGNE

Galicia
SANTIAGO DE COMPOSTELA

RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial

ESPAGNE

Madrid
MADRID

SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Subdirección de Promoción y Prevención de la Salud
Subdirección de Promoción y Prevención de la Salud

ESPAGNE

Madrid
MADRID

REHem-AR-SEHOP: Spanish Registry of Hemoglobinopathies and Rare Anemias from the Spanish Society of Paediatric Haematology and Oncology
Hospital Materno Infantil Gregorio Marańón
Sección de Oncología y Hematología Pediátricas y del Adolescente

ESPAGNE

Madrid
MADRID

Financé par un membre IRDiRCERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

ESPAGNE

Madrid
MADRID

ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

ESPAGNE

Murcia
MURCIA

SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
Región de Murcia. Consejería de Sanidad y Política Social
Servicio de Planificación y Financiación Sanitaria

ESPAGNE

Navarra
PAMPLONA

Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles

FRANCE

GRAND-EST
VANDOEUVRE-LČS-NANCY

Registre national des tumeurs solides de l'enfant
Faculté de médecine de Nancy
Registre national des tumeurs solides de l'enfant

FRANCE

ILE-DE-FRANCE
PARIS

Financé par un membre IRDiRCRaDiCo-MPS: Les patients atteints de mucopolysaccharidoses en France ŕ l'čre des traitements spécifiques
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service de Neuropédiatrie - Unité de neuropédiatrie et pathologie du développement

GRECE

GREECE
ATHENS

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

PAYS-BAS

Gelderland
NIJMEGEN

AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie

PAYS-BAS

Gelderland
NIJMEGEN

AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence

PAYS-BAS

Zuid-Holland
LEIDEN

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

ROYAUME-UNI

Buckinghamshire
AMERSHAM

UK mucopolysaccharidosis registry
MPS House
The Society for Mucopolysaccharide Diseases

ROYAUME-UNI

Greater London
LONDON

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

ROYAUME-UNI

Greater Manchester
ADDRESS: NOT PROVIDED - UK

NHR: National Haemoglobinopathy Registry
Institution: Information not provided - UK

SUEDE

Region Skĺne
LUND

IKBKGbase: Mutation registry for Nemo deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

RAG1base: Mutation registry for autosomal recessive RAG1 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

RAG2base: Mutation registry for autosomal recessive RAG2 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

WASbase: Mutation registry for Wiskott-Aldrich syndrome (WAS)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

ORAI1base: Mutation registry for Severe combined immunodeficiency
Lund University
Department of Experimental Medical Science

ALLEMAGNE

Baden-Württemberg
FREIBURG

ALLEMAGNE

Baden-Württemberg
FREIBURG

Financé par un membre IRDiRCGAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz

ALLEMAGNE

Baden-Württemberg
HEIDELBERG

GPOH-registry sickle cell disease
Zentrum für Kinder- und Jugendmedizin - Angelika-Lautenschläger-Klinik
Klinik für Kinderheilkunde III - Pädiatrische Onkologie, Hämatologie, Immunologie und Pneumologie

ALLEMAGNE

Baden-Württemberg
MANNHEIM

Register for rare myeloproliferative neoplasms
Universitätsmedizin Mannheim
III. Medizinische Klinik

ALLEMAGNE

Hamburg
HAMBURG

Financé par un membre IRDiRCMucopolysaccharidosis type 1 (MPS I) Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

ALLEMAGNE

Hamburg
HAMBURG

Financé par un membre IRDiRCInternational Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

ALLEMAGNE

Hamburg
HAMBURG

Financé par un membre IRDiRCFabry Disease Registry -DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

ALLEMAGNE

Hamburg
HAMBURG

Hunter Outcome Survey (HOS): patient registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

ALLEMAGNE

Hessen
FRANKFURT AM MAIN

Ataxia-Telangiectasia patient registry - contributes to the ESID Database
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Schwerpunkt Allergologie, Pneumologie und Mukoviszidose

ALLEMAGNE

Hessen
MARBURG

German national case collection of familial pancreatic cancer
Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg
Klinik für Visceral- Thorax- und Gefäßchirurgie

ALLEMAGNE

Niedersachsen
HANNOVER

ALLEMAGNE

Niedersachsen
HANNOVER

Central national database for incidence and outcome of congenital bone marrow failure syndromes, biobank and database of the BMFS-Network
Medizinische Hochschule Hannover
Koordinationsstelle des Netzwerkes für angeborene Störungen der Blutbildung

ALLEMAGNE

Niedersachsen
HANNOVER

Financé par un membre IRDiRCSCNIR: neutropenia cell bank
Medizinische Hochschule Hannover
SCNIR - Europazentrale

ALLEMAGNE

Nordrhein-Westfalen
DÜSSELDORF

MDS Registry: German myelodysplastic syndromes patient registry
Universitätsklinikum Düsseldorf
Klinik für Hämatologie, Onkologie und Klinische Immunologie

ALLEMAGNE

Nordrhein-Westfalen
DÜSSELDORF

German central registry for Sickle cell disease
Universitätsklinikum Düsseldorf
Klinik für Kinder-Onkologie, -Hämatologie und klinische Immunologie

AUSTRALIE

Victoria
MEKBOURNE

Lymphoma and Related Diseases Registry (LaRDR)
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIE

Victoria
MEKBOURNE

Myelodysplastic Syndromes Registry (MDS)
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIE

Western Australia
MURDOCH

Financé par un membre IRDiRCGaucher disease registry model
Murdoch University
Centre for Comparative Genomics (CCG)

AUTRICHE

OBERÖSTERREICH
LINZ

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

AUTRICHE

OBERÖSTERREICH
LINZ

Non-Interventional, web-based Registry for Histiocytic Disorders
Ordensklinikum Linz GmbH Elisabethinen
Interne 1 - Hämatologie mit Stammzelltransplantation, Hämostaseologie und medizinische Onkologie

AUTRICHE

SALZBURG
SALZBURG

AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): Austrian Registry on Hypomethylating Agents in Myeloid Neoplasms
Universitätsklinikum der Paracelsus Medizinischen Privatuniversität
Universitätsklinik für Innere Medizin III

AUTRICHE

TIROL
INNSBRUCK

MDS: Austrian myelodysplastic syndromes patient registry - contributes to the European Myelodysplastic Syndromes (MDS) Registry
Medizinische Universität Innsbruck
Universitätsklinik für Innere Medizin V - Hämatologie und Onkologie

BELGIQUE

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

EUNEFRON: registry of the European network for the study of orphan nephropathies
Cliniques universitaires Saint-Luc - UCLouvain
Laboratory of Nephrology

BELGIQUE

OOST-VLAANDEREN
GENT

Registre belge des patients atteints de neutropénie chronique sévčre - contribution au Registre International des Neutropénies Chroniques Sévčres
Kinderziekenhuis Prinses Elisabeth- UZ Gent
Pediatric Hematology-Oncology and Stem Cell Transplantation/Afdeling Hemato-oncologie en stamceltransplantatie kinderen

BULGARIE

 South Central region
PLOVDIV

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

BULGARIE

 South Central region
PLOVDIV

National registry of patients with mucopolysaccharidosis type II (MPS2) - BG
BAPES - Bulgarian Association for Promotion of Education and Science
Information Centre for Rare Diseases and Orphan Drugs

ESPAGNE

Aragón
ZARAGOZA

REEG: Spanish Gaucher's disease registry
Fundación Espańola para el estudio y terapéutica de la enfermedad de Gaucher

ESPAGNE

Cataluńa
BARCELONA

Spanish patient registry of myelodysplasic syndromes
Grupo Espańol de Síndromes Mielodisplásicos

ESPAGNE

Cataluńa
BARCELONA

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

ESPAGNE

Cataluńa
BELLATERRA

DNA repair biobank
Universitat Autňnoma de Barcelona
Grupo de inestabilidad genómica y reparación del DNA

ESPAGNE

Comunidad Valenciana
VALENCIA

Epidemiologic Registry of Patients Diagnosed With Acute Myeloid Leukemia - ES
Hospital Universitario y Politécnico La Fe
Servicio de Hematología y Hemoterapia

ETATS-UNIS

Arizona
TUCSON

International Morquio A registry
The Carol Ann Foundation & The International Morquio Organization

ETATS-UNIS

Massachusetts
CAMBRIDGE

FOS : Fabry Outcome Survey
Shire Human Genetics Therapies, Inc.

ETATS-UNIS

Massachusetts
CAMBRIDGE

HOS : Hunter Outcome Survey
Shire Human Genetics Therapies, Inc.

ETATS-UNIS

Pennsylvania
UNIVERSITY PARK

The Globin Gene Server / beta globin (HBB)
Huck Institutes of the Life Sciences, Pennsylvania State University
Center for Comparative Genomics and Bioinformatics

FRANCE

ILE-DE-FRANCE
CLICHY

Registre français labellisé de la maladie de Gaucher
CHU Paris Nord-Val de Seine - Hôpital Beaujon
Service de médecine interne

FRANCE

ILE-DE-FRANCE
PARIS

LeukoDataBase européenne
CHU Paris - Hôpital Robert Debré
Centre de référence des leucodystrophies

FRANCE

ILE-DE-FRANCE
PARIS

Registre français labellisé des neutropénies sévčres chroniques - contribuant au registre international SCN (SCNIR)
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCE

ILE-DE-FRANCE
PARIS

GMF: registre français des syndromes myélodysplasiques et des leucémies secondaires chimio- et radio-induites
CHU Paris-GH St-Louis Lariboisičre F.Widal - Hôpital Saint-Louis
Groupe Francophone des Myélodysplasies (GFM)

FRANCE

ILE-DE-FRANCE
PARIS

Etude CoF-AT: étude de cohorte française sur l'ataxie-télangiectasie
CLCC Institut Curie
Cancer et génome: bioinformatique, biostatistiques et épidémiologie d'un systčme complexe

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

ILE-DE-FRANCE
VILLEJUIF

Registre français des hémopathies malignes de l'enfant
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANCE

ILE-DE-FRANCE
VILLEJUIF

Registre français des lymphomes de l'adulte
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANCE

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

L.E.A. - Cohorte Prospective Multicentrique des Leucémies de l'Enfant et Adolescent
CHU de Marseille - Hôpital de la Timone
Evaluation des systčmes de soins et santé perçue

GRECE

ATTIKI
ATHENS

HONGRIE

Közép-Magyarország
DEBRECEN

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

IRLANDE

County Dublin
DUBLIN

Irish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Children's Health Ireland @ Temple Street
Department of Haematology

IRLANDE

County Dublin
DUBLIN

Hunter Outcome Survey (HOS): patient registry
Children's Health Ireland @ Temple Street
National Centre for Inherited Metabolic Disorders

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

ITALIE

LAZIO
ROMA

RIAT: Ataxia teleangiectasia Italian registry
A.O. S. Andrea
Servizio di Genetica Medica

ITALIE

LAZIO
ROMA

V-RIAT: variant Ataxia telangiectasia Italian registry
A.O. S. Andrea
Servizio di Genetica Medica

ITALIE

LAZIO
ROMA

Lymphomas Database
Azienda Ospedaliera Sant'Andrea

ITALIE

LIGURIA
GENOVA

Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche

ITALIE

LOMBARDIA
PAVIA

EUMDS: European Registry for Myelodysplastic Syndromes - part of EuroLeukemiaNet (ELN)
Fondazione IRCCS Policlinico San Matteo
S.C. Ematologia

ITALIE

LOMBARDIA
PAVIA

Italian myelodysplastic syndromes registry
Fondazione IRCCS Policlinico San Matteo
S.C. Ematologia

ITALIE

TOSCANA
FIRENZE

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

ITALIE

TOSCANA
FIRENZE

Biogene- Biobank of biological material from patients affected by genetic diseases
Azienda Ospedaliero Universitaria Careggi
S.O.D. Diagnostica Genetica

ITALIE

TOSCANA
FIRENZE

Italian registry of hypertrophic cardiomyopathy in Anderson-Fabry disease
Azienda Ospedaliero Universitaria Careggi
Dipartimento Cardiotoracovascolare

ITALIE

TOSCANA
FIRENZE

Italian Network MDS Registry (FISM_registry)
Azienda Ospedaliero Universitaria Careggi
S.O.D. Ematologia

NORVEGE

Řstlandet
OSLO

Norwegian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Oslo Universitetssykehus HF, Rikshospitalet
Barne- og ungdomsklinikken

PAYS-BAS

Noord-Holland
AMSTERDAM

Dutch patient registry for Fabry disease
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAYS-BAS

Noord-Holland
AMSTERDAM

Dutch patient registry for Niemann-Pick Disease Type B
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAYS-BAS

Noord-Holland
AMSTERDAM

Dutch patient registry for Gaucher disease
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAYS-BAS

Noord-Holland
NAARDEN

The international Fabry registry
Genzyme Europe B.V.

PAYS-BAS

Noord-Holland
NAARDEN

The international Mps I registry
Genzyme Europe B.V.

PAYS-BAS

Utrecht
UTRECHT

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

POLOGNE

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

PORTUGAL

NORTE
PORTO

Portuguese Fabry patient registry - contributing to the international Fabry registry
Centro Hospitalar de S. Joăo, EPE
Departamento de Genética

ROYAUME-UNI

Greater London
LONDON

English severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
University College London Hospitals, NHS Foundation Trust
Haematology and oncology department

ROYAUME-UNI

Nottinghamshire
NOTTINGHAM

Ataxia-Telangiectasia International Registry (A-T Society)
William Whitehouse
Pediatric Neurology Department

ROYAUME-UNI

Surrey
SUTTON

ROYAUME-UNI

Tyne & Wear
NEWCASTLE UPON TYNE

International A-T Registry
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine

ROYAUME-UNI

West Midlands
BIRMINGHAM

Financé par un membre IRDiRCInternational Niemann-Pick Disease Registry
Queen Elizabeth Hospital
Inherited Metabolic Disorders

ROYAUME-UNI

West Yorkshire
LEEDS

ROYAUME-UNI

West Yorkshire
LEEDS

SUEDE

Region Skĺne
LUND

BLMbase: Mutation registry for Bloom Syndrome
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CASP10base: Mutation registry for Autoimmune lymphoproliferative syndrome, type II (ALPS2)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CASP8base: Mutation registry for Caspase 8 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CD3Gbase: Mutation registry for autosomal recessive CD3gamma immunodeficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

SUEDE

Region Skĺne
LUND

DNMT3Bbase: Mutation registry for ICF syndrome
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

ELA2base: Mutation registry for Cyclic and congenital neutropenia
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

SUEDE

Region Skĺne
LUND

IL2RAbase: Mutation registry for Interleuken 2 receptor alpha deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

LIG4base: Mutation registry for LIG4 syndrome
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

MRE11Abase: Mutation registry for Ataxia-telangiectasia-like disorder (ATLD)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

NPbase: Mutation registry for PNP deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

SUEDE

Region Skĺne
LUND

RFX5base: Mutation registry for MHCII promoter X box regulatory factor 5 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

SUEDE

Region Skĺne
LUND

RFXAPbase: Mutation registry for Regulatory factor X-associated protein deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

SH2D1Abase: Mutation registry for X-linked lymphoproliferative syndrome (XLP)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

STX11base: Mutation registry for Familial haemophagocytic lymphohistiocytosis 4 (FHL4)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

TAP1base: Mutation registry for TAP1 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

TAP2base: Mutation registry for TAP2 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

TAPBPbase: Mutation registry for Tapasin deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

UNC13Dbase: Mutation registry for Familial hemophagocytic lymphohistiocytosis 3
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

ZAP70base: Mutation registry for autosomal recessive ZAP70 immunodeficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CD8Abase: Mutation registry for CD8 alpha deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

BIRC4base: Mutation registry for X-linked lymphoproliferative syndrome
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

NRASbase: Mutation registry for Autoimmune lymphoproliferative syndrome type IV
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

Swedish Acute Myelogenous Leukemia Registry
Skĺnes Universitetssjukhus
Lund onkologiskt centrum

SUEDE

Region Stockholm
HUDDINGE

SUISSE

Suisse Alémanique
BERN

Swiss Paediatric Renal Registry
Institute of Social and Preventive Medicine (ISPM)

TCHEQUE, REPUBLIQUE

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

TURQUIE

TURKEY
ANKARA

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

ALLEMAGNE

Baden-Württemberg
FREIBURG

National registry for Blackfan-Diamond disease
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie

ALLEMAGNE

Baden-Württemberg
TÜBINGEN

Niemann-Pick Type C Disease Gene Variation Database
Institut für Medizinische Genetik und angewandte Genomik Tübingen
Institut für Medizinische Genetik und angewandte Genomik

ALLEMAGNE

Baden-Württemberg
ULM

German paroxysmal nocturnal hemoglobinuria registry
DRK Baden-Württemberg/ Hessen
Institut für Klinische Transfusionsmedizin und Immungenetik Ulm

ALLEMAGNE

Bayern
MÜNCHEN

Financé par un membre IRDiRCEUTOS: European chronic myeloid leukemia patient registry (collaboration between the European LeukemiaNet and Novartis Europe)
LMU Klinikum der Universität München - Campus Großhadern
Institut für medizinische Informationsverarbeitung, Biometrie und Epidemiologie

ALLEMAGNE

Hessen
GIEßEN

NHL-BFM Registry 2012: Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin Lymphoma diagnosed in children and adolescents
Kinderklinik des UKGM am Standort Gießen
Abteilung für Pädiatrische Hämatologie und Onkologie

ALLEMAGNE

Niedersachsen
HANNOVER

German Fanconi anemia registry
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie

ALLEMAGNE

Nordrhein-Westfalen
MÜNSTER

ALLEMAGNE

Nordrhein-Westfalen
MÜNSTER

NHL-BFM Registry 2012: Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin Lymphoma diagnosed in children and adolescents
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Pädiatrische Hämatologie und Onkologie

AUSTRALIE

Victoria
MEKBOURNE

Myeloma and Related Diseases Registry (MRDR)
Monash University
Department of Epidemiology & Preventive Medicine

AUTRICHE

TIROL
INNSBRUCK

Austrian chronic myeloid leukemia registry
Medizinische Universität Innsbruck
Universitätsklinik für Innere Medizin V - Hämatologie und Onkologie

AUTRICHE

WIEN
ADDRESS: NOT PROVIDED - AT

Thromboreductin-Registry
Institution: Information not provided - AT

AUTRICHE

WIEN
WIEN

Austrian myeloma registry
OeGHO Geschäftsstelle
Österreichische Gesellschaft für Hämatologie & Medizinische Onkologie

AUTRICHE

WIEN
WIEN

Austrian chronic myeloid leukemia registry
OeGHO Geschäftsstelle
Österreichische Gesellschaft für Hämatologie & Medizinische Onkologie

AUTRICHE

WIEN
WIEN

BELGIQUE

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian sickle cell anemia registry
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

BELGIQUE

OOST-VLAANDEREN
GENT

I-DSD: International Disorders of Sex Development registry - Flanders contribution (Ghent university hospital)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team] - UZ Gent

BULGARIE

 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

BULGARIE

 South Central region
PLOVDIV

National registry of adult patients with chronic myeloid leukemia - BG
BAPES - Bulgarian Association for Promotion of Education and Science
Information Centre for Rare Diseases and Orphan Drugs

ESPAGNE

Castilla - León
SALAMANCA

National DNA Bank: Rare diseases sample collection
Centro de Investigación del Cáncer (USAL-CSIC)
Banco Nacional de ADN

ESPAGNE

Madrid
MADRID

Spanish Registry of Patients with Fanconi Anemia
CIEMAT - Centro de Investigaciones Energéticas Medioambientales y Tecnológicas
Terapias innovadoras en el sistema hematopoyético

ETATS-UNIS

Illinois
CHICAGO

PNH Registry: Paroxysmal Nocturnal Hemoglobinuria registry
ICON Clinical Research - Lifecycle science group
ICON Clinical Research

ETATS-UNIS

New York
NEW YORK

IFAR: International Fanconi Anemia patient Registry
The Rockefeller University
Laboratory of Genome Maintenance

FRANCE

ILE-DE-FRANCE
CRÉTEIL

Registre français de la drépanocytose
Hôpitaux Universitaires Henri Mondor
Unité des Maladies Génétiques du Globule Rouge

FRANCE

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

Registre français labellisé des patients atteints de thalassémie
CHU de Marseille - Hôpital de la Timone
Laboratoire de génétique moléculaire

ITALIE

CAMPANIA
NAPOLI

RIAF: Fanconi's Anemia Italian Registry
P.S.I. "Elena d'Aosta"
U.O.C. Servizio di Genetica

ITALIE

LAZIO
ROMA

Paroxysmal Nocturnal Hemoglobinuria Registry
ISS - Istituto Superiore di Sanitŕ
Dipartimento del Farmaco

ITALIE

LOMBARDIA
PAVIA

RIMM: Italian registry for myelofibrosis with myeloid metaplasia
Fondazione IRCCS Policlinico San Matteo
Laboratorio di Epidemiologia Clinica

ITALIE

PUGLIA
SAN GIOVANNI ROTONDO

Registry of pregnant patients affected by essential thrombocythemia
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
Laboratorio di Ematologia

ITALIE

SICILIA
PALERMO

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

ITALIE

VENETO
VERONA

Italian Registry for patients with Shwachman Diamond Syndrome
Azienda Ospedaliera Universitaria Integrata di Verona - Ospedale Borgo Trento
Centro Fibrosi Cistica

PAYS-BAS

Gelderland
NIJMEGEN

Radboud Biobank - Iron Biobank (cell lines, DNA, serum and urine)
Radboudumc - Radboud universitair medisch centrum
Translationeel Metabool Laboratorium

PAYS-BAS

Noord-Holland
AMSTERDAM

Dutch patient registry for Niemann-Pick Disease Type C
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAYS-BAS

Noord-Holland
AMSTERDAM

The ALD Connect Patient Portal
Amsterdam UMC, locatie AMC
Laboratorium Genetische Metabole Ziekten

PAYS-BAS

Noord-Holland
NAARDEN

PORTUGAL

NORTE
PORTO

MitoBreak: The mitochondrial DNA breakpoints database.
CIIMAR - Interdisciplinary Centre of Marine and Environmental Research

ROYAUME-UNI

Greater Manchester
MANCHESTER

Registry for Patients with Niemann-Pick Type C Disease
St Mary's Hospital
Manchester Cente for Genomic Medicine

ROYAUME-UNI

North Yorkshire
YORK

UK & Ireland Fanconi Anaemia Registry
The University of York
Epidemiology and Genetics Unit

ROYAUME-UNI

Surrey
SUTTON

NSHLG - National Study of Hodgkin's Lymphoma Genetics
The Institute of Cancer Research
Section of Epidemiology

ROYAUME-UNI

West Midlands
BIRMINGHAM

EBV associated NK/T cell malignancies registry
University of Birmingham
Institute for cancer studies

SUEDE

Region Skĺne
LUND

ADAbase: Mutation registry for Adenosine deaminase deficiency (ADA)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

AICDAbase: Mutation registry for Non-X-linked hyper-IgM syndrome
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

AP3B1base: Mutation registry for Hermansky-Pudlak syndrome 2
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CD3Dbase: Mutation registry for Autosomal recessive CD3delta deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CD3Ebase: Mutation registry for autosomal recessive CD3epsilon immunodeficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CD40base: Mutation registry for CD40 deficiency (previously known as TNFRSF5base)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

DCLRE1Cbase: Mutation registry for Artemis deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

DKC1base: Mutation registry for Hoyeraal-Hreidarsson syndrome and dyskeratosis congenita
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

GFI1base: Mutation registry for SCN and NI-CINA
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

IL7Rbase: Mutation registry for Interleukin-7 receptor alpha deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

JAK3base: Mutation registry for autosomal recessive severe combined JAK3 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

LYSTbase: Mutation registry for Chediak-Higashi syndrome (previously known as CHS1base)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

PTPRCbase: Mutation registry for CD45 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

RAB27Abase: Mutation registry for Griscelli syndrome, type 2 (GS2)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

SBDSbase: Mutation registry for Shwachman-Diamond syndrome
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

TAZbase: Mutation registry for Barth syndrome
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

UNGbase: Mutation registry for UNG deficiency (Hyper-IgM syndrome, type 5)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

CD40Lbase: Mutation registry for X-linked Hyper-IgM syndrome (XHIM)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

MAPBPIPbase: Mutation registry for Endosomal adaptor protein p14 deficiency
Lund University
Department of Experimental Medical Science

SUEDE

Region Uppsala
UPPSALA

Swedish Chronic Myeloid Leukemia Registry
Akademiska Sjukhuset
Regionalt Onkologiskt Centrum

SUEDE

Region Västra Götaland
GÖTEBORG

Swedish Multiple Myeloma Registry
Sahlgrenska Universitetssjukhuset
Göteborg onkologiskt centrum

ALLEMAGNE

Hessen
FRANKFURT AM MAIN

German registry for Langerhans Cell Histiocytosis in childhood (LCH-REG-DE 2013)
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Schwerpunkt Onkologie, Hämatologie und Hämostaseologie

ALLEMAGNE

Hessen
FRANKFURT AM MAIN

GMALL-registry: registry for adult patients with acute lymphoblastic leukemia or related diseases
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik II - Hämatologie, Onkologie, Hämostaseologie, Rheumatologie, Infektiologie

ALLEMAGNE

Hessen
FRANKFURT AM MAIN

GMALL-registry: Biobank for adult patients with acute lymphoblastic leukemia or related diseases
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik II - Hämatologie, Onkologie, Hämostaseologie, Rheumatologie, Infektiologie

ALLEMAGNE

Mecklenburg-Vorpommern
ROSTOCK

ALLEMAGNE

Nordrhein-Westfalen
KREFELD

Central Cutaneous Lymphoma Registry
HELIOS Klinikum Krefeld
Klinik für Dermatologie

ALLEMAGNE

Rheinland-Pfalz
MAINZ

German childhood cancer registry (Partner of ACCIS: Automated Childhood Cancer Information System, Member of IACR and ENCR)
Institut für Medizinische Biometrie, Epidemiologie und Informatik (IMBEI)
Deutsches Kinderkrebsregister am IMBEI

ALLEMAGNE

Rheinland-Pfalz
MAINZ

Mainz registry of congenital anomalies - contributes to the EUROCAT network
Universitätsmedizin Mainz
Geburtenregister Mainzer Modell

ALLEMAGNE

Sachsen-Anhalt
MAGDEBURG

Centre Saxony-Anhalt registry of congenital anomalies - contributes to the EUROCAT network
Universitätsklinikum Magdeburg A.ö.R
MONZ - Fehlbildungsmonitoring Sachsen-Anhalt

AUTRICHE

SALZBURG
SALZBURG

AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): PTCL registry (T-cell lymphoma in Austria)
Universitätsklinikum der Paracelsus Medizinischen Privatuniversität
Universitätsklinik für Innere Medizin III

AUTRICHE

STEIERMARK
GRAZ

Styrian registry of congenital anomalies - contributes to the EUROCAT network
Medizinische Universität Graz
Forschungsverein zur Registrierung steirischer Geburtsfehlbildungen

AUTRICHE

WIEN
WIEN

AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): ALL-Registry and Biobank
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

AUTRICHE

WIEN
WIEN

AUTRICHE

WIEN
WIEN

Registry for relapsing acute lymphoblastic leukemia in childhood and adolescence
St. Anna Kinderspital
Zentrum für Kinder- und Jugendheilkunde

BELGIQUE

ANTWERPEN
ANTWERPEN

Antwerpen registry of congenital anomalies - contributes to the EUROCAT network
Provinciaal Instituut voor Hygiëne (PIH)- Antwerpen
EUROCAT Belgium_Antwerpen

BELGIQUE

HAINAUT
GOSSELIES

Registre des anomalies congénitales du Hainaut et de Namur - contribution au réseau EUROCAT
Institut de Pathologie et de Génétique
Département de Génétique Clinique - Institut de Pathologie et de Génétique (IPG)

DANEMARK

Syddanmark
ODENSE

Funen county registry of congenital anomalies - contributes to the EUROCAT network
University of Southern Denmark
Epidemiology department

ESPAGNE

Cataluńa
BARCELONA

Spanish registry of pulmonary Langerhans cell histiocytosis
Hospital de la Santa Creu i Sant Pau
Servicio de Neumología

ESPAGNE

Madrid
MADRID

Spanish Academy of Dermatology and Venereology (AEDV) Registry of primary cutaneous lymphoma
Academia Espańola de Dermatología y Venereología
Unidad de investigación de la Fundación Academia Espańola de Dermatología y Venereología

FINLANDE

Finland
HELSINKI

Register of Congenital Malformations
Terveyden ja hyvinvoinnin laitos (THL)
Finnish Institute for Health and Welfare (THL)

FRANCE

AUVERGNE-RHONE-ALPES
CLERMONT-FERRAND

Registre des anomalies congénitales de la région Auvergne - contribuant au réseau EUROCAT
CHU de Clermont-Ferrand - Hôpital d'Estaing
Service de génétique médicale

FRANCE

AUVERGNE-RHONE-ALPES
LYON

Registre des anomalies congénitales de la région Rhône-Alpes (REMERA) - contribuant au réseau EUROCAT
Registre des Malformations en Rhône Alpes
Registre des Malformations en Rhône Alpes REMERA

FRANCE

BRETAGNE
RENNES

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

ILE-DE-FRANCE
PARIS

Registre français labellisé de l'histiocytose langerhansienne
CHU Paris Centre - Hôpital Cochin, Site Cochin
Unité fonctionnelle de Médecine interne et centre de référence maladies rares

FRANCE

ILE-DE-FRANCE
PARIS

Registre français labellisé de l'histiocytose langerhansienne
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCE

ILE-DE-FRANCE
PARIS

Biobanque du registre français labellisé de l'histiocytose langerhansienne
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCE

ILE-DE-FRANCE
PARIS

Registre français labellisé de l'histiocytose langerhansienne
CHU Paris-GH St-Louis Lariboisičre F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

Registre et cohorte pronostic des lymphomes cutanés en Aquitaine
CHU de Bordeaux - Hôpital Saint André
Unité de Dermatologie Cancérologie

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

Registre des tumeurs primitives du systčme nerveux central en Gironde
Université Bordeaux 2 - Victor Ségalen
Institut de Santé Publique, d'Épidémiologie et de Développement

FRANCE

OUTRE-MER
FORT DE FRANCE

Registre des anomalies congénitales des Antilles françaises - contribuant au réseau EUROCAT
CHU de Martinique - Maison de la Femme, de la Mčre et de l'Enfant
Centre Pluridisciplinaire de Diagnostic Prénatal (CPDP)

FRANCE

OUTRE-MER
SAINT-PIERRE

Registre des anomalies congénitales de l'île de La Réunion - contribuant au réseau EUROCAT
CHU de la Réunion - GH Sud Réunion - Saint-Pierre
Service de Génétique Médicale

IRLANDE

County Cork
CORK

IRLANDE

County Dublin
DUBLIN

Dublin registry of congenital anomalies - contributes to the EUROCAT network
Dr. Steeven's Hospital
HSE Registry of Congenital Anomalies (East)

IRLANDE

County Kilkenny
KILKENNY

South East of Ireland registry of congenital anomalies - part of BINOCAR and EUROCAT network
Health Service Executive South SE
South East of Ireland registry of congenital anomalies

ITALIE

CAMPANIA
BENEVENTO

Campania registry of congenital anomalies - contributes to the EUROCAT network
A.O.R.N. "Gaetano Rummo"
U.O.C. di Genetica Medica

ITALIE

PUGLIA
VALENZANO

The Italian multi-region thalassaemia registry
Fondazione per la Ricerca Farmacologica Gianni Benzi
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus

ITALIE

SICILIA
CATANIA

ISMAC: Sicilian registry of congenital anomalies - contributes to the EUROCAT network
ASMAC
Associazione per la Prevenzione Sociale e per il Trattamento delle Malformazioni Congenite

ITALIE

TOSCANA
FIRENZE

Italian LCH Registry - Langerhans cell histiocytosis
Azienda Ospedaliera Universitaria Anna Meyer
D.A.I. Oncoematologia

ITALIE

TOSCANA
PISA

Tuscan Registry of Congenital Anomalies
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Unitŕ di Ricerca Epidemiologia Ambientale e Registri di Patologia

ITALIE

VENETO
PADOVA

North-East of Italy registry of congenital anomalies - contributes to the EUROCAT network
Azienda Ospedaliera di Padova
U.O.C. Genetica Clinica ed Epidemiologica

MALTE

MALTA
G'MANGIA

MALTA CONGENITAL ANOMALIES REGISTRY (MCAR) - it contributes to EUROCAT
Ministry for Health
Directorate of Health Information and Research

PAYS-BAS

Groningen
GRONINGEN

EUROCAT Northern Netherlands - contributes to the international EUROCAT network
UMCG - Universitair Medisch Centrum Groningen
Afdeling Genetica

POLOGNE

Poznan
POZNAN

PRCM: Polish registry of congenital malformations - contributes to the EUROCAT network
Uniwersytet Medyczny im. Karola Marcinkowskiego w Poznaniu
Zaklad Genetyki Medycznej

PORTUGAL

SUL
LISBOA

RENAC - Portuguese registry of congenital anomalies (contributes to the EUROCAT network)
Instituto Nacional de Saúde Dr. Ricardo Jorge - Lisboa
Departamento de Epidemiologia

ROYAUME-UNI

Hampshire
SOUTHAMPTON

WANDA - Wessex registry of antenatally detected anomalies - part of BINOCAR and EUROCAT network
Princess Anne Hospital
Paediatric Endocrinology and the Wessex Clinical Genetics Service

SUEDE

Region Skĺne
LUND

HAX1base: Mutation registry for Severe congenital neutropenia (Kostmann disease)
Lund University
Department of Experimental Medical Science

SUEDE

Region Skĺne
LUND

Swedish Acute Lymphoblastic Leukemia Registry
Skĺnes Universitetssjukhus
Lund onkologiskt centrum

SUISSE

Suisse Romande
LAUSANNE

Swiss registries for Interstitial and Orphan Lung Diseases (SIOLD Registries)
Centre Hospitalier Universitaire Vaudois CHUV
Swiss registries for Interstitial and Orphan Lung Diseases

SUISSE

Suisse Romande
LAUSANNE

EUROCAT VAUD Switzerland - Registre des malformations congénitales du canton de Vaud
Centre Hospitalier Universitaire Vaudois CHUV
Département Femme-Mčre-Enfant - Maternité

ALLEMAGNE

Hessen
GIEßEN

LBL Registry: Registry for children with lymphoblastic lymphoma
Kinderklinik des UKGM am Standort Gießen
Abteilung für Pädiatrische Hämatologie und Onkologie

ALLEMAGNE

Nordrhein-Westfalen
MÜNSTER

LBL Registry: Registry for children with lymphoblastic lymphoma
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Pädiatrische Hämatologie und Onkologie

ALLEMAGNE

Baden-Württemberg
ULM

German marginal zone lymphoma registry
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

ALLEMAGNE

Baden-Württemberg
ULM

German follicular lymphoma registry
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

ALLEMAGNE

Rheinland-Pfalz
MAINZ

EMCL-REGISTRY: European Mantle cell lymphoma registry
Universitätsmedizin Mainz
III. Medizinische Klinik und Poliklinik

Réseaux de registres et biobanques

ALLEMAGNE

Niedersachsen
HANNOVER

SCNIR: Severe Chronic Neutropenia International Registry
  • Medizinische Hochschule Hannover
  • SCNIR - Europazentrale
  • ROYAUME-UNI

    Antrim and Newtownabbey
    NEWTOWNABBEY