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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-LČS-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
RaDiCo-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
Deutsches Register für schwere chronische Neutropenien - Eingebunden in das SCN international registry (SCNIR)
Medizinische Hochschule Hannover
SCNIR - Europazentrale
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 Extremeńo 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 Marańón
Sección de Oncología y Hematología Pediátricas y del Adolescente
SPAIN
Madrid
MADRID
ERN [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
Basque 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 Skĺne
LUND
IKBKGbase: Mutation registry for Nemo deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
NFKBIAbase: Mutation registry for Autosomal dominant anhidrotic ectodermal dysplasia and T-cell immunodeficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
RAG1base: Mutation registry for autosomal recessive RAG1 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
RAG2base: Mutation registry for autosomal recessive RAG2 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
WASbase: Mutation registry for Wiskott-Aldrich syndrome (WAS)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
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
Gaucher 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
FINLAND
Finland
TURKU
Finnish patient registry on Fabry disease - contributing to the international Fabry registry and Shire registry
Turku University Hospital
Division of Medicine AC2
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 systčme 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 systčmes de soins et santé perçue
GERMANY
Baden-Württemberg
FREIBURG
GAIN: Patient Registry of the German Network for the Research and Therapy Optimization of Patients with Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz
GERMANY
Baden-Württemberg
FREIBURG
GAIN-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
GAIN: Patient Registry of the German Network for the Research and Therapy Optimization of Patients with Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
ESID-Registry
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
Fabry Disease Registry & Pregnancy Sub-registry - DE
Zentrum Innere Medizin (ZIM)
Medizinische Klinik und Poliklinik I - Fabry-Zentrum Würzburg
GERMANY
Hamburg
HAMBURG
Mucopolysaccharidosis type 1 (MPS I) Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin
GERMANY
Hamburg
HAMBURG
International 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
Mecklenburg-Vorpommern
ROSTOCK
GERMANY
Niedersachsen
HANNOVER
GAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CRC Hannover
Hannover Unified Biobank (HUB)
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
SCNIR: 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
Greek severe chronic neutropenia patient registry - contributes to the SCN international registry (SCNIR)
"Aghia Sophia" Children's Hospital
First department of paediatrics
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
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
Finnish patient registry on Fabry disease - contributing to the international Fabry registry and Shire registry
Genzyme Europe B.V.
NETHERLANDS
Noord-Holland
NAARDEN
International Collaborative Gaucher Group (ICGG) Gaucher 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
Řstlandet
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
Portuguese severe chronic neutropenia patient registry - contributes to the SCN international registry (SCNIR)
Hospitais da Universidade de Coimbra
Laboratório de hematologia
PORTUGAL
NORTE
PORTO
Portuguese Fabry patient registry - contributing to the international Fabry registry
Centro Hospitalar Universitário de S. Joăo, EPE
Departamento de Genética
SERBIA
Serbia
BELGRADE
Serbian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Clinical Center of Serbia
Institute of Haematology
SPAIN
Aragón
ZARAGOZA
REEG: Spanish Gaucher's disease registry
Fundación Espańola para el estudio y terapéutica de la enfermedad de Gaucher
SPAIN
Cataluńa
BARCELONA
Spanish patient registry of myelodysplasic syndromes
Grupo Espańol de Síndromes Mielodisplásicos
SPAIN
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
SPAIN
Cataluńa
BELLATERRA
DNA repair biobank
Universitat Autňnoma 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 Skĺne
LUND
AIREbase: Mutation registry for Autoimmune polyendocrinopathy with candidiasis and ectodermal dystrophy (APECED)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
BLMbase: Mutation registry for Bloom Syndrome
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CASP10base: Mutation registry for Autoimmune lymphoproliferative syndrome, type II (ALPS2)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CASP8base: Mutation registry for Caspase 8 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CD3Gbase: Mutation registry for autosomal recessive CD3gamma immunodeficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CIITAbase: Mutation registry for MHCII transactivating protein deficiency (previously known as MHC2TAbase)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
DNMT3Bbase: Mutation registry for ICF syndrome
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
ELA2base: Mutation registry for Cyclic and congenital neutropenia
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
FASLGbase: Mutation registry for Autoimmune lymphoproliferative syndrome, type 1B (ALPS1B) (previously known as TNFSF6base)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
'FOXP3base: Mutation registry for Immunodysregulation, polyendocrinopathy, and enteropathy, X-linked; IPEX'
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
IL2RAbase: Mutation registry for Interleuken 2 receptor alpha deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
LIG4base: Mutation registry for LIG4 syndrome
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
MRE11Abase: Mutation registry for Ataxia-telangiectasia-like disorder (ATLD)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
NHEJ1base: Mutation registry for Combined immunodeficiency (CID) associated with microcephaly and increased cellular sensitivity to IR
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
NPbase: Mutation registry for PNP deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
PRF1base: Mutation registry for Familiar haemophagocytic lymphohistiocytosis, type II (FHL2)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
RFX5base: Mutation registry for MHCII promoter X box regulatory factor 5 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
RFXANKbase: Mutation registry for Ankyrin repeat containing regulatory factor X-associated protein deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
RFXAPbase: Mutation registry for Regulatory factor X-associated protein deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
SH2D1Abase: Mutation registry for X-linked lymphoproliferative syndrome (XLP)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
STX11base: Mutation registry for Familial haemophagocytic lymphohistiocytosis 4 (FHL4)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
TAP1base: Mutation registry for TAP1 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
TAP2base: Mutation registry for TAP2 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
TAPBPbase: Mutation registry for Tapasin deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
UNC13Dbase: Mutation registry for Familial hemophagocytic lymphohistiocytosis 3
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
ZAP70base: Mutation registry for autosomal recessive ZAP70 immunodeficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CD8Abase: Mutation registry for CD8 alpha deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
BIRC4base: Mutation registry for X-linked lymphoproliferative syndrome
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
NRASbase: Mutation registry for Autoimmune lymphoproliferative syndrome type IV
Lund University
Department of Experimental Medical Science
SWEDEN
Region Stockholm
DANDERYD
Finnish patient registry on Fabry disease - contributing to the international Fabry registry and Shire registry
Shire Human Genetic Therapies AB
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
ERNEST - European Registry for Myeloproliferative Neoplasms towards a better understanding of Epidemiology, Survival and Treatment
Guy's Hospital
Department of Haematology
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
Greater Manchester
MANCHESTER
CCRN 2421 (Noonan/RASopathy patients): A registry study to characterize genetic and pathway biomarkers in Noonan syndrome and other RASopathy patients - UK
St Mary's Hospital
Manchester Cente for Genomic Medicine
UNITED KINGDOM
Nottinghamshire
NOTTINGHAM
Ataxia-Telangiectasia International Registry (A-T Society)
William Whitehouse
Pediatric Neurology Department
UNITED KINGDOM
Surrey
SUTTON
FCLL - A Genetic Study of Chronic Lymphocytic Leukaemia and Other Lymphoproliferative Disease
The Institute of Cancer Research
Section of Epidemiology
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
EUMDS: European Registry for Myelodysplastic Syndromes - part of EuroLeukemiaNet (ELN)
Leeds General Infirmary
Department of Haematology
UNITED KINGDOM
West Yorkshire
LEEDS
English severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
St James's University Hospital
Paediatric Day Hospital
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
Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin lymphoma in children and adolescents
St. Anna Kinderspital
Zentrum für Kinder- und Jugendheilkunde
BELGIUM
OOST-VLAANDEREN
GENT
I-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
ILE-DE-FRANCE
PARIS
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
FREIBURG
GERMANY
Bayern
MÜNCHEN
EUTOS: 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
Neuro-Heart-Registry: Registry for patients with heart involment in neurovascular diseases
Universitätsklinikum Münster
Herz-MRT-Zentrum
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 Sanitŕ
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 Skĺne
LUND
ADAbase: Mutation registry for Adenosine deaminase deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
AICDAbase: Mutation registry for Non-X-linked hyper-IgM syndrome
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
AP3B1base: Mutation registry for Hermansky-Pudlak syndrome 2
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CD3Dbase: Mutation registry for Autosomal recessive CD3delta deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CD3Ebase: Mutation registry for autosomal recessive CD3epsilon immunodeficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CD40base: Mutation registry for CD40 deficiency (previously known as TNFRSF5base)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CXCR4base: Mutation registry for WHIM syndrome (warts, hypogammaglobulinemia, immunodeficiency, and myelokathexis)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
DCLRE1Cbase: Mutation registry for Artemis deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
DKC1base: Mutation registry for Hoyeraal-Hreidarsson syndrome and dyskeratosis congenita
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
GFI1base: Mutation registry for SCN and NI-CINA
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
IL7Rbase: Mutation registry for Interleukin-7 receptor alpha deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
JAK3base: Mutation registry for autosomal recessive severe combined JAK3 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
LYSTbase: Mutation registry for Chediak-Higashi syndrome (previously known as CHS1base)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
PTPRCbase: Mutation registry for CD45 deficiency
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
RAB27Abase: Mutation registry for Griscelli syndrome, type 2 (GS2)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
SBDSbase: Mutation registry for Shwachman-Diamond syndrome
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
TAZbase: Mutation registry for Barth syndrome
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
UNGbase: Mutation registry for UNG deficiency (Hyper-IgM syndrome, type 5)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
CD40Lbase: Mutation registry for X-linked Hyper-IgM syndrome (XHIM)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
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
International 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
Registry for Philadelphia chromosome-positive acute lymphoblastic leukemia in childhood and adolescence
St. Anna Kinderspital
Zentrum für Kinder- und Jugendheilkunde
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
Bretagne registry of congenital anomalies - contributes to the EUROCAT network
CHU de Rennes - Hôpital Pontchaillou
CHU 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
Paris registry of congenital anomalies - contributes to the EUROCAT network
APHP - HUPC - Site Cochin
Equipe EPOPé
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 Mčre 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
National patient registry rare histiocytic disorders - part of the International Rare Histiocytic Disorders Registry (IRHDR)
Universitäts-Kinder- und Jugendklinik Rostock
Kinder- und Jugendklinik
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
South of Ireland registry of congenital anomalies - contributes to the EUROCAT network
St. Finbarr's Hospital
Department of Public Health
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
Unitŕ 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
Cataluńa
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 Espańola de Dermatología y Venereología
Unidad de investigación de la Fundación Academia Espańola 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 Skĺne
LUND
HAX1base: Mutation registry for Severe congenital neutropenia (Kostmann disease)
Lund University
Department of Experimental Medical Science
SWEDEN
Region Skĺne
LUND
Swedish Acute Lymphoblastic Leukemia Registry
Skĺne 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-Mčre-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
KÖLN
DCLLSG registry of the German CLL Study Group - Long term observation of patients with CLL, B-PLL, T-PLL, SLL, T/ NK-LGL and Richter transformation
Universitätsklinikum Köln
Klinik I für Innere Medizin
GERMANY
Nordrhein-Westfalen
MÜNSTER
LBL Registry: Registry for children with lymphoblastic lymphoma
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Pädiatrische Hämatologie und Onkologie
AUSTRIA
WIEN
WIEN
NF-10 - Prospective collection of potentially prognostically relevant data in patients with indolent non-follicular B-cell lymphoma
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für 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
NORWAY
Vestlandet
BERGEN
EURADRENAL: pathophysiology and natural course of autoimmune adrenal failure in Europe (registries)
Haukeland University Hospital
UNITED KINGDOM
Antrim and Newtownabbey
NEWTOWNABBEY