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Registries and Biobanks

AUSTRALIA

Victoria
MEKBOURNE

Haemoglobinopathy Registry
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIA

Victoria
MEKBOURNE

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

AUSTRIA

WIEN
WIEN

Austrian Bone Marrow Donor Registry
Österreichische Knochenmarkspendezentrale
Fonds Österreichisches Stammzellregister

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian Registry of Sickle Cell Disease and Rare Anemia Patients (BR-ScRa)
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

FRANCE

GRAND-EST
VANDOEUVRE-LÈS-NANCY

National registry of children solid tumors
Faculté de médecine de Nancy
Registre national des tumeurs solides de l'enfant

FRANCE

ILE-DE-FRANCE
PARIS

Funded by an IRDiRC memberRaDiCo-MPS: National cohort on Mucopolysaccharidosis in the era of specific therapeutics
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
Service de Neuropédiatrie - Unité de neuropédiatrie et pathologie du développement

GERMANY

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

GERMANY

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

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

Baden-Württemberg
ULM

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

GERMANY

Niedersachsen
HANNOVER

GERMANY

Nordrhein-Westfalen
KÖLN

Tumor bank for embryonal tumors
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

GERMANY

Rheinland-Pfalz
MAINZ

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

GERMANY

Schleswig-Holstein
KIEL

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

GREECE

GREECE
ATHENS

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

NETHERLANDS

Gelderland
NIJMEGEN

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

NETHERLANDS

Gelderland
NIJMEGEN

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

NETHERLANDS

Zuid-Holland
LEIDEN

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

SPAIN

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

SPAIN

Aragón
ZARAGOZA

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

SPAIN

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

SPAIN

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

SPAIN

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

SPAIN

Comunidad Valenciana
VALENCIA

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

SPAIN

Extremadura
MÉRIDA

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

SPAIN

Galicia
SANTIAGO DE COMPOSTELA

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

SPAIN

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

SPAIN

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 Marañón
Sección de Oncología y Hematología Pediátricas y del Adolescente

SPAIN

Madrid
MADRID

Funded by an IRDiRC memberERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

SPAIN

Madrid
MADRID

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

SPAIN

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

SPAIN

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

SPAIN

País Vasco
BARAKALDO

Funded by an IRDiRC memberBasque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco

SPAIN

País Vasco
VITORIA-GASTEIZ

Rare Diseases Registry of the Basque Country
Gobierno Vasco. Departamento de Salud
Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

UNITED KINGDOM

Buckinghamshire
AMERSHAM

UK mucopolysaccharidosis registry
MPS House
The Society for Mucopolysaccharide Diseases

UNITED KINGDOM

Greater London
LONDON

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

UNITED KINGDOM

Greater Manchester
ADDRESS: NOT PROVIDED - UK

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

AUSTRALIA

Victoria
MEKBOURNE

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

AUSTRALIA

Victoria
MEKBOURNE

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

AUSTRALIA

Western Australia
MURDOCH

Funded by an IRDiRC memberGaucher disease registry model
Murdoch University
Centre for Comparative Genomics (CCG)

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

AUSTRIA

OBERÖSTERREICH
LINZ

Register für histiozytäre Erkrankungen
Ordensklinikum Linz GmbH Elisabethinen
Interne 1 - Hämatologie mit Stammzelltransplantation, Hämostaseologie und medizinische Onkologie

AUSTRIA

SALZBURG
SALZBURG

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

AUSTRIA

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

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

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

BELGIUM

OOST-VLAANDEREN
GENT

Belgian severe chronic neutropenia patient registry - contributes to the Severe Chronic Neutropenia International Registry (SCNIR)
Kinderziekenhuis Prinses Elisabeth- UZ Gent
Pediatric Hematology-Oncology and Stem Cell Transplantation/Afdeling Hemato-oncologie en stamceltransplantatie kinderen

BULGARIA

 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

BULGARIA

 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

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
CLICHY

French certified registry of patients affected by Gaucher disease
CHU Paris Nord-Val de Seine - Hôpital Beaujon
Service de médecine interne

FRANCE

ILE-DE-FRANCE
PARIS

French severe chronic neutropenia certified patient registry - contributes to the SCN international registry (SCNIR)
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCE

ILE-DE-FRANCE
PARIS

FROG: FRench Observatory on Gaucher disease
Actelion Pharmaceuticals France SAS

FRANCE

ILE-DE-FRANCE
PARIS

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

FRANCE

ILE-DE-FRANCE
PARIS

CoF-AT study: a French cohort on ataxia-telangiectasia
CLCC Institut Curie
Cancer et génome: bioinformatique, biostatistiques et épidémiologie d'un système complexe

FRANCE

ILE-DE-FRANCE
PARIS

CoF-AT study: a French cohort on ataxia-telangiectasia
CLCC Institut Curie
Service de Génétique

FRANCE

ILE-DE-FRANCE
PARIS

GMF: French registry of myelodysplastic syndromes and leukemia chemo- and radio-induced
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Groupe Francophone des Myélodysplasies (GFM)

FRANCE

ILE-DE-FRANCE
VILLEJUIF

French registry of child hematological malignancies
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANCE

ILE-DE-FRANCE
VILLEJUIF

French registry of adult lymphomas
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANCE

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

LEA - Multicentric prospective cohort of children and adolescents malignant hemopathies
CHU de Marseille - Hôpital de la Timone
Evaluation des systèmes de soins et santé perçue

GERMANY

Baden-Württemberg
FREIBURG

GERMANY

Baden-Württemberg
FREIBURG

Funded by an IRDiRC memberGAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz

GERMANY

Baden-Württemberg
FREIBURG

Registry of the European Working Group (EWOG) of Myelodysplastic Syndromes (MDS) and Juvenile Myelomonocytic Leukemia (JMML) in childhood
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie

GERMANY

Baden-Württemberg
HEIDELBERG

Rare anaemia Registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg

GERMANY

Baden-Württemberg
HEIDELBERG

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

GERMANY

Baden-Württemberg
MANNHEIM

Register for rare myeloproliferative neoplasms
Universitätsmedizin Mannheim
III. Medizinische Klinik

GERMANY

Bayern
WÜRZBURG

Funded by an IRDiRC memberFabry Disease Registry & Pregnancy Sub-registry - DE
Zentrum Innere Medizin (ZIM)
Medizinische Klinik und Poliklinik I - Fabry-Zentrum Würzburg

GERMANY

Hamburg
HAMBURG

Funded by an IRDiRC memberMucopolysaccharidosis type 1 (MPS I) Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANY

Hamburg
HAMBURG

Funded by an IRDiRC memberInternational Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANY

Hamburg
HAMBURG

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

GERMANY

Hessen
FRANKFURT AM MAIN

Ataxia-Telangiectasia patient registry - contributes to the ESID Database
Universitätsklinikum Frankfurt
Schwerpunkt Allergologie, Pneumologie und Mukoviszidose

GERMANY

Hessen
MARBURG

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

GERMANY

Niedersachsen
HANNOVER

GERMANY

Niedersachsen
HANNOVER

AML-BFM Register 2017: Registry for children and adolescents with acute myeloid leukemia
KPOH Geschäftsführung Hannover
Kompetenznetz Pädiatrische Onkologie und Hämatologie

GERMANY

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

GERMANY

Niedersachsen
HANNOVER

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

GERMANY

Nordrhein-Westfalen
DÜSSELDORF

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

GERMANY

Nordrhein-Westfalen
ESSEN

AML-BFM Register 2017: Registry for children and adolescents with acute myeloid leukemia
Universitätsklinikum Essen
Klinik für Kinderheilkunde III - Abteilung für pädiatrische Hämatologie und Onkologie

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

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

IRELAND

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

ITALY

LAZIO
ROMA

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

ITALY

LAZIO
ROMA

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

ITALY

LAZIO
ROMA

Lymphomas Database
Azienda Ospedaliera Sant'Andrea

ITALY

LIGURIA
GENOVA

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

ITALY

LOMBARDIA
PAVIA

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

ITALY

LOMBARDIA
PAVIA

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

ITALY

TOSCANA
FIRENZE

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

ITALY

TOSCANA
FIRENZE

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

ITALY

TOSCANA
FIRENZE

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

ITALY

TOSCANA
FIRENZE

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Noord-Holland
NAARDEN

NETHERLANDS

Noord-Holland
NAARDEN

NETHERLANDS

Noord-Holland
NAARDEN

Funded by an IRDiRC memberInternational MPS I registry
Genzyme Europe B.V.

NETHERLANDS

Utrecht
UTRECHT

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

NORWAY

Østlandet
OSLO

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

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

PORTUGAL

NORTE
PORTO

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

SERBIA

Serbia
BELGRADE

SPAIN

Aragón
ZARAGOZA

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

SPAIN

Cataluña
BARCELONA

Spanish patient registry of myelodysplasic syndromes
Grupo Español de Síndromes Mielodisplásicos

SPAIN

Cataluña
BARCELONA

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

SPAIN

Cataluña
BELLATERRA

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

SPAIN

Comunidad Valenciana
VALENCIA

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

Swedish Acute Myelogenous Leukemia Registry
Skåne University Hospital, Lund

SWEDEN

Region Stockholm
HUDDINGE

Swedish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Karolinska Institutet - Huddinge
Department of Medicine, Huddinge (MedH)

SWITZERLAND

Suisse Alémanique
BERN

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

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)
University College London Hospitals, NHS Foundation Trust
Haematology and oncology department

UNITED KINGDOM

Nottinghamshire
NOTTINGHAM

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

UNITED KINGDOM

Surrey
SUTTON

UNITED KINGDOM

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

UNITED KINGDOM

West Yorkshire
LEEDS

UNITED KINGDOM

West Yorkshire
LEEDS

UNITED STATES

Arizona
TUCSON

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

UNITED STATES

Massachusetts
CAMBRIDGE

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

UNITED STATES

Massachusetts
CAMBRIDGE

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

UNITED STATES

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

AUSTRALIA

Victoria
MEKBOURNE

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

AUSTRIA

TIROL
INNSBRUCK

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

AUSTRIA

WIEN
ADDRESS: NOT PROVIDED - AT

Thromboreductin-Registry
Institution: Information not provided - AT

AUSTRIA

WIEN
WIEN

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

AUSTRIA

WIEN
WIEN

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

AUSTRIA

WIEN
WIEN

BELGIUM

OOST-VLAANDEREN
GENT

Funded by an IRDiRC memberI-DSD: International Disorders of Sex Development registry - BE - Flanders contribution (Ghent university hospital)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team] - UZ Gent

BULGARIA

 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

BULGARIA

 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

FRANCE

ILE-DE-FRANCE
CRÉTEIL

French sickle cell anemia registry
Hôpitaux Universitaires Henri Mondor
Unité des Maladies Génétiques du Globule Rouge

FRANCE

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

NaThalY: National Thalassemia Registry
CHU de Marseille - Hôpital de la Timone
Laboratoire de génétique moléculaire

GERMANY

Baden-Württemberg
FREIBURG

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

GERMANY

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

GERMANY

Baden-Württemberg
ULM

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

GERMANY

Bayern
MÜNCHEN

Funded by an IRDiRC memberEUTOS: 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

GERMANY

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

GERMANY

Niedersachsen
HANNOVER

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

GERMANY

Nordrhein-Westfalen
MÜNSTER

GERMANY

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

ITALY

CAMPANIA
NAPOLI

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

ITALY

LAZIO
ROMA

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

ITALY

LOMBARDIA
PAVIA

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

ITALY

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

ITALY

SICILIA
PALERMO

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

ITALY

VENETO
VERONA

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

NETHERLANDS

Gelderland
NIJMEGEN

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Noord-Holland
AMSTERDAM

ALD Mutation Database
Amsterdam UMC, locatie AMC
Laboratorium Genetische Metabole Ziekten

PORTUGAL

NORTE
PORTO

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

SPAIN

Castilla - León
SALAMANCA

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

SPAIN

Madrid
MADRID

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Uppsala
UPPSALA

Nationellt kvalitetsregister för KML
Uppsala University Hospital - Akademiska Sjukhuset
Regional Cancer Centre, Mid Sweden - Regionalt Cancercentrum Mellansverige

SWEDEN

Region Västra Götaland
GÖTEBORG

Svenska myelomregistret
Sahlgrenska University Hospital
Divison of hematology and coagulation

UNITED KINGDOM

Greater Manchester
MANCHESTER

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

UNITED KINGDOM

North Yorkshire
YORK

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

UNITED KINGDOM

Surrey
SUTTON

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

UNITED KINGDOM

West Midlands
BIRMINGHAM

Funded by an IRDiRC memberInternational Niemann-Pick Disease Registry
Queen Elizabeth Hospital
Inherited Metabolic Disorders

UNITED KINGDOM

West Midlands
BIRMINGHAM

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

UNITED STATES

Illinois
CHICAGO

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

UNITED STATES

New York
NEW YORK

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

AUSTRIA

SALZBURG
SALZBURG

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

AUSTRIA

STEIERMARK
GRAZ

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

AUSTRIA

WIEN
WIEN

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

AUSTRIA

WIEN
WIEN

AUSTRIA

WIEN
WIEN

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

BELGIUM

ANTWERPEN
ANTWERPEN

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

BELGIUM

HAINAUT
GOSSELIES

Hainaut and Namur registry of congenital anomalies - contributes to the EUROCAT network
Institut de Pathologie et de Génétique
Département de Génétique Clinique - Institut de Pathologie et de Génétique (IPG)

DENMARK

Syddanmark
ODENSE

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

FINLAND

Finland
HELSINKI

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

FRANCE

AUVERGNE-RHONE-ALPES
CLERMONT-FERRAND

Auvergne registry of congenital anomalies - contributes to the EUROCAT network
CHU de Clermont-Ferrand - Hôpital d'Estaing
Service de génétique médicale

FRANCE

AUVERGNE-RHONE-ALPES
LYON

Rhône-Alpes registry of congenital anomalies - contributes to the EUROCAT network
Registre des Malformations en Rhône Alpes
Registre des Malformations en Rhône Alpes REMERA

FRANCE

BRETAGNE
RENNES

FRANCE

ILE-DE-FRANCE
PARIS

French certified patient registry for Langerhans cell histiocytosis
AP-HP.Centre - Université de Paris - Hôpital Cochin
Unité fonctionnelle de Médecine interne et centre de référence maladies rares

FRANCE

ILE-DE-FRANCE
PARIS

French certified patient registry for Langerhans cell histiocytosis
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCE

ILE-DE-FRANCE
PARIS

Biobank of the French certified patient registry for Langerhans cell histiocytosis
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

ILE-DE-FRANCE
PARIS

French certified patient registry for Langerhans cell histiocytosis
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Service de pneumologie

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

Registry and pronostic cohort of cutaneous lymphomas in Aquitaine
CHU de Bordeaux - Hôpital Saint André
Unité de Dermatologie Cancérologie

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

Primary central nervous system tumors registry of Gironde
Université Bordeaux 2 - Victor Ségalen
Institut de Santé Publique, d'Épidémiologie et de Développement

FRANCE

OUTRE-MER
FORT DE FRANCE

French West Indies registry of congenital anomalies - contributes to the EUROCAT network
CHU de Martinique - Maison de la Femme, de la Mère et de l'Enfant
Centre Pluridisciplinaire de Diagnostic Prénatal (CPDPN)

FRANCE

OUTRE-MER
SAINT-PIERRE

La Réunion Fench Island registry of congenital anomalies - contributes to the EUROCAT network
CHU de la Réunion - GH Sud Réunion - Saint-Pierre
Service de Génétique Médicale

GERMANY

Hessen
FRANKFURT AM MAIN

German registry for Langerhans Cell Histiocytosis in childhood (LCH-REG-DE 2013)
Universitätsklinikum Frankfurt
Schwerpunkt Onkologie, Hämatologie und Hämostaseologie

GERMANY

Hessen
FRANKFURT AM MAIN

GMALL-registry: registry for adult patients with acute lymphoblastic leukemia or related diseases
Universitätsklinikum Frankfurt
Medizinische Klinik II - Hämatologie, Onkologie, Hämostaseologie, Rheumatologie, Infektiologie

GERMANY

Hessen
FRANKFURT AM MAIN

GMALL-registry: Biobank for adult patients with acute lymphoblastic leukemia or related diseases
Universitätsklinikum Frankfurt
Medizinische Klinik II - Hämatologie, Onkologie, Hämostaseologie, Rheumatologie, Infektiologie

GERMANY

Mecklenburg-Vorpommern
ROSTOCK

GERMANY

Nordrhein-Westfalen
KREFELD

Central Cutaneous Lymphoma Registry
HELIOS Klinikum Krefeld
Klinik für Dermatologie

GERMANY

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

GERMANY

Rheinland-Pfalz
MAINZ

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

GERMANY

Sachsen-Anhalt
MAGDEBURG

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

IRELAND

County Cork
CORK

IRELAND

County Dublin
DUBLIN

Dublin registry of congenital anomalies - contributes to the EUROCAT network
Health Services Executive
HSE Registry of Congenital Anomalies (East)

IRELAND

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

ITALY

CAMPANIA
BENEVENTO

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

ITALY

PUGLIA
VALENZANO

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

ITALY

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

ITALY

TOSCANA
FIRENZE

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

ITALY

TOSCANA
PISA

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

MALTA

MALTA
G'MANGIA

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

NETHERLANDS

Groningen
GRONINGEN

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

POLAND

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 - Registo Nacional de Anomalias Congénitas (contribui para a rede EUROCAT)
Instituto Nacional de Saúde Dr. Ricardo Jorge - Lisboa
Departamento de Epidemiologia

SPAIN

Cataluña
BARCELONA

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

SPAIN

Madrid
MADRID

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

SPAIN

País Vasco
VITORIA-GASTEIZ

RACAV: Registry of congenital anomalies of the Basque Country (Spain) - contributes to the EUROCAT network
Gobierno Vasco. Departamento de Salud
Registro de anomalías congénitas del País Vasco

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

Swedish Acute Lymphoblastic Leukemia Registry
Skåne University Hospital, Lund

SWITZERLAND

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

SWITZERLAND

Suisse Romande
LAUSANNE

EUROCAT VAUD Switzerland - Registry of congenital malformations of canton Vaud
Centre Hospitalier Universitaire Vaudois CHUV
Département Femme-Mère-Enfant - Maternité

UNITED KINGDOM

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

GERMANY

Hessen
GIEßEN

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

GERMANY

Nordrhein-Westfalen
MÜNSTER

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

GERMANY

Baden-Württemberg
ULM

German marginal zone lymphoma registry
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

GERMANY

Baden-Württemberg
ULM

German follicular lymphoma registry
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

GERMANY

Rheinland-Pfalz
MAINZ

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

Networks of registries and biobanks

GERMANY

Niedersachsen
HANNOVER

SCNIR: Internationales Register für schwere chronische Neutropenien
  • Medizinische Hochschule Hannover
  • SCNIR - Europazentrale
  • UNITED KINGDOM

    Antrim and Newtownabbey
    NEWTOWNABBEY