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Gefinancierd door een IRDiRC-lid = Lid van een ERN =

Registers en biobanken

AUSTRALIË

Victoria
MEKBOURNE

Haemoglobinopathy Registry
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIË

Victoria
MEKBOURNE

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

BELGIË

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

DUITSLAND

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

DUITSLAND

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

DUITSLAND

Baden-Württemberg
ULM

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

DUITSLAND

Niedersachsen
HANNOVER

DUITSLAND

Nordrhein-Westfalen
KÖLN

Gefinancierd door een IRDiRC-lidTumor bank for embryonal tumors
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

DUITSLAND

Nordrhein-Westfalen
KÖLN

Central tumour bank for tumour and normal tissue
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

DUITSLAND

Schleswig-Holstein
KIEL

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

FRANKRIJK

GRAND-EST
VANDOEUVRE-LÈS-NANCY

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

FRANKRIJK

ILE-DE-FRANCE
PARIS

Gefinancierd door een IRDiRC-lidRaDiCo-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

ITALIË

LAZIO
ROMA

RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare

ITALIË

TOSCANA
PISA

Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio

ITALIË

VENETO
PADOVA

Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto

NEDERLAND

Gelderland
NIJMEGEN

AGORA: biobank (DNA) voor aangeboren afwijkingen en kinderkanker
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie

NEDERLAND

Gelderland
NIJMEGEN

AGORA: biobank (DNA) voor aangeboren afwijkingen en kinderkanker
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence

NEDERLAND

Zuid-Holland
LEIDEN

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

OOSTENRIJK

WIEN
WIEN

Austrian Bone Marrow Donor Registry
Österreichische Knochenmarkspendezentrale
Fonds Österreichisches Stammzellregister

SPANJE

Andalucía
SEVILLA

Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Subdirección Técnica Asesora de Gestión de la Información

SPANJE

Aragón
ZARAGOZA

Gefinancierd door een IRDiRC-lidRare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria

SPANJE

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

SPANJE

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
Generalitat Valenciana. Conselleria de Sanitat Universal i Salut Pública
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles

SPANJE

Extremadura
MÉRIDA

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

SPANJE

Galicia
SANTIAGO DE COMPOSTELA

RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Atención Hospitalaria

SPANJE

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
Servicio de Oncología y Hematología Pediátricas y del Adolescente

SPANJE

Madrid
MADRID

Gefinancierd door een IRDiRC-lidERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

SPANJE

Madrid
MADRID

Gefinancierd door een IRDiRC-lidRePER: Rare Diseases Patient Registry
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPANJE

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

SPANJE

Navarra
PAMPLONA

RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria

SPANJE

País Vasco
BARAKALDO

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

SPANJE

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

USA

South Dakota
SIOUX FALLS

VERENIGD KONINKRIJK

Greater Manchester
ADDRESS: NOT PROVIDED - UK

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

ZWEDEN

Region Skåne
LUND

IKBKGbase: Mutation registry for Nemo deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

RAG1base: Mutation registry for autosomal recessive RAG1 deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

RAG2base: Mutation registry for autosomal recessive RAG2 deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

ORAI1base: Mutation registry for Severe combined immunodeficiency
Lunds Universitet
Department of Experimental Medical Science

AUSTRALIË

Victoria
MEKBOURNE

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

BELGIË

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

BULGARIJE

 South Central region
PLOVDIV

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

BULGARIJE

 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

DUITSLAND

Baden-Württemberg
FREIBURG

DUITSLAND

Baden-Württemberg
FREIBURG

Gefinancierd door een IRDiRC-lidGAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz

DUITSLAND

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

DUITSLAND

Baden-Württemberg
HEIDELBERG

Rare anaemia Registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg

DUITSLAND

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

DUITSLAND

Baden-Württemberg
MANNHEIM

Register for rare myeloproliferative neoplasms
Universitätsmedizin Mannheim
III. Medizinische Klinik

DUITSLAND

Bayern
WÜRZBURG

Gefinancierd door een IRDiRC-lidFabry Disease Registry & Pregnancy Sub-registry - DE
Zentrum Innere Medizin (ZIM)
Medizinische Klinik und Poliklinik I - Fabry-Zentrum Würzburg

DUITSLAND

Hamburg
HAMBURG

Gefinancierd door een IRDiRC-lidMucopolysaccharidosis type 1 (MPS I) Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

DUITSLAND

Hamburg
HAMBURG

Gefinancierd door een IRDiRC-lidInternational Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

DUITSLAND

Hamburg
HAMBURG

Gefinancierd door een IRDiRC-lidHunter Outcome Survey (HOS): patient registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

DUITSLAND

Hessen
FRANKFURT AM MAIN

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

DUITSLAND

Hessen
MARBURG

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

DUITSLAND

Niedersachsen
HANNOVER

DUITSLAND

Niedersachsen
HANNOVER

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

DUITSLAND

Niedersachsen
HANNOVER

SCNIR (Severe Chronic Neutropenia International Registry) : Neutropenia biobank
Medizinische Hochschule Hannover
SCNIR - Europazentrale

DUITSLAND

Nordrhein-Westfalen
DÜSSELDORF

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

DUITSLAND

Nordrhein-Westfalen
ESSEN

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

DUITSLAND

Rheinland-Pfalz
MAINZ

GLA Registry for Malignant Lymphoma of the German Lymphoma Alliance
Universitätsmedizin Mainz
III. Medizinische Klinik und Poliklinik

FINLAND

Finland
TURKU

FRANKRIJK

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

FRANKRIJK

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

FRANKRIJK

ILE-DE-FRANCE
PARIS

MYELODYSPLASIC SYNDROMES AND SECONDARY CHEMICAL AND RADIO-INDUCED LEUKEMIA OBSERVATORY FROM GFM CENTRES - MDS Registry
GHU AP-HP Nord. Université de Paris - Hôpital Saint-Louis
Groupe Francophone des Myélodysplasies (GFM)

FRANKRIJK

ILE-DE-FRANCE
VILLEJUIF

RNHE - National registry of pediatric hematological malignancies
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANKRIJK

ILE-DE-FRANCE
VILLEJUIF

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

FRANKRIJK

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

GRIEKENLAND

ATTIKI
ATHENS

IERLAND

County Dublin
DUBLIN

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

IERLAND

County Dublin
DUBLIN

Gefinancierd door een IRDiRC-lidHunter Outcome Survey (HOS): patient registry
Children's Health Ireland @ Temple Street
National Centre for Inherited Metabolic Disorders

ISRAËL

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

ITALIË

LAZIO
ROMA

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

ITALIË

LAZIO
ROMA

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

ITALIË

LIGURIA
GENOVA

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

ITALIË

LOMBARDIA
PAVIA

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

ITALIË

LOMBARDIA
PAVIA

EUMDS: European Registry for Myelodysplastic Syndromes -IT
Fondazione IRCCS Policlinico San Matteo
S.C. Ematologia

ITALIË

LOMBARDIA
RANICA

Biobank for rare diseases and kidney diseases
Istituto di Ricerche Farmacologiche Mario Negri
Centro Risorse Biologiche

ITALIË

SICILIA
PALERMO

SCNIR: Italian severe chronic neutropenia registry - contributes to the SCN international registry
A.O. Civico - Di Cristina - Benfratelli
Oncoematologia Pediatrica

ITALIË

TOSCANA
FIRENZE

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

ITALIË

TOSCANA
FIRENZE

FISiM Registry - Italian MDS Network
Azienda Ospedaliero Universitaria Careggi
MDS Unit

ITALIË

TOSCANA
FIRENZE

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

NEDERLAND

Gelderland
NIJMEGEN

Gefinancierd door een IRDiRC-lidERN [GENTURIS] - GENTURIS registratie: Europese Registratie voor Genetische Tumor Risico Syndromen
Radboudumc - Radboud universitair medisch centrum
Sectie Klinische Genetica

NEDERLAND

Noord-Holland
AMSTERDAM

The MLD initiative
Amsterdam UMC
Afdeling Kinderneurologie

NEDERLAND

Noord-Holland
AMSTERDAM

Dutch patient registry for Fabry disease
Amsterdam UMC
Afdeling Erfelijke Stofwisselingsziekten

NEDERLAND

Noord-Holland
AMSTERDAM

Dutch patient registry for Gaucher disease
Amsterdam UMC
Afdeling Erfelijke Stofwisselingsziekten

NEDERLAND

Noord-Holland
AMSTERDAM

The MLD initiative
Amsterdam UMC
Afdeling Erfelijke Stofwisselingsziekten

NEDERLAND

Noord-Holland
AMSTERDAM

NEDERLAND

Noord-Holland
AMSTERDAM

NEDERLAND

Noord-Holland
AMSTERDAM

Gefinancierd door een IRDiRC-lidInternational MPS I registry
Genzyme Europe B.V.

NEDERLAND

Utrecht
UTRECHT

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

NOORWEGEN

Østlandet
OSLO

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

OOSTENRIJK

OBERÖSTERREICH
LINZ

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

OOSTENRIJK

OBERÖSTERREICH
LINZ

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

OOSTENRIJK

SALZBURG
SALZBURG

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

POLEN

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)
Centro Hospitalar e Universitário de Coimbra, EPE - H. Pediátrico e H. Covões
Serviço de Hematologia Clínica

SERBIA

Serbia
BELGRADE

SPANJE

Aragón
ZARAGOZA

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

SPANJE

Baleares
PALMA DE MALLORCA

Gefinancierd door een IRDiRC-lidRERIB: Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Consejería de Salud y Consumo
Servicio de Epidemiología

SPANJE

Castilla - León
SALAMANCA

Spanish patient registry of myelodysplasic syndromes
Complejo Asistencial Universitario de Salamanca
Servicio de Hematología

SPANJE

Cataluña
BARCELONA

Spanish patient registry of myelodysplasic syndromes
Hospital Universitari Vall d'Hebron
Servicio de Hematología y Hemoterapia

SPANJE

Cataluña
BARCELONA

Collection of samples of DNA repair syndromes integrated into the National Biobank of Rare Diseases (BioNER)
IIB Sant Pau - Institut de Recerca de l'Hospital de la Santa Creu i Sant Pau
Servicio de análisis de fragilidad cromosómica

SPANJE

Madrid
MADRID

Gefinancierd door een IRDiRC-lidSIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Direccion General de Salud Publica
Subdirección General de Vigilancia en Salud Pública

SPANJE

Madrid
MADRID

Spanish Severe Chronic Neutropenia Registry - contributes to the SCN international registry (SCNIR)
Hospital Universitario La Paz
Servicio de Hemato-Oncología pediátrica

TSJECHIË

Capital City Prague
PRAHA

TURKIJE

TURKEY
ANKARA

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

USA

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

VERENIGD KONINKRIJK

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

VERENIGD KONINKRIJK

Hertfordshire
HARPENDEN

International A-T Registry - UK
AT Society
A-T Patient Registry

VERENIGD KONINKRIJK

Surrey
SUTTON

VERENIGD KONINKRIJK

Tyne & Wear
WASHINGTON

Gefinancierd door een IRDiRC-lidINPDR : International Niemann-Pick Disease Registry
Niemann-Pick (UK)
INPDR Registry

VERENIGD KONINKRIJK

West Yorkshire
LEEDS

VERENIGD KONINKRIJK

West Yorkshire
LEEDS

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

BLMbase: Mutation registry for Bloom Syndrome
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

CASP8base: Mutation registry for Caspase 8 deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

CD3Gbase: Mutation registry for autosomal recessive CD3gamma immunodeficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

DNMT3Bbase: Mutation registry for ICF syndrome
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

ELA2base: Mutation registry for Cyclic and congenital neutropenia
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

IL2RAbase: Mutation registry for Interleuken 2 receptor alpha deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

LIG4base: Mutation registry for LIG4 syndrome
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

NPbase: Mutation registry for PNP deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

PRF1base: Mutation registry for Familiar haemophagocytic lymphohistiocytosis, type II (FHL2)
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

TAP1base: Mutation registry for TAP1 deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

TAP2base: Mutation registry for TAP2 deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

TAPBPbase: Mutation registry for Tapasin deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

UNC13Dbase: Mutation registry for Familial hemophagocytic lymphohistiocytosis 3
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

ZAP70base: Mutation registry for autosomal recessive ZAP70 immunodeficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

CD8Abase: Mutation registry for CD8 alpha deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

BIRC4base: Mutation registry for X-linked lymphoproliferative syndrome
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

NRASbase: Mutation registry for Autoimmune lymphoproliferative syndrome type IV
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

Swedish Acute Myelogenous Leukemia Registry
Skånes Universitetssjukhus
Skåne University Hospital

ZWEDEN

Region Stockholm
HUDDINGE

ZWEDEN

Region Stockholm
SOLNA

RMMS: Registry of Inherited Metabolic Diseases
Karolinska Universitetssjukhuset
CMMS - Centre for Inherited Metabolic Diseases

ZWITSERLAND

Suisse Alémanique
BERN

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

ZWITSERLAND

Suisse Alémanique
BERN

Swiss Fabry Registry
Universitätsspital Inselspital
Universitätsklinik für Nephrologie und Hypertonie

ZWITSERLAND

Suisse Alémanique
ZÜRICH

Swiss Fabry Registry
Universitätsspital Zürich
Klinik für Endokrinologie, Diabetologie und Klinische Ernährung

ZWITSERLAND

Suisse Romande
LAUSANNE

Swiss Fabry Registry
Swiss Foundation of Fabry Disease
Swiss Fabry Registry

AUSTRALIË

Victoria
MEKBOURNE

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

BELGIË

OOST-VLAANDEREN
GENT

Gefinancierd door een IRDiRC-lidI-DSD: Internationale register voor aandoeningen van geslachtsontwikkeling - BE - Vlaanderen bijdrage (UZ Gent)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team] - UZ Gent

BULGARIJE

 South Central region
PLOVDIV

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

DUITSLAND

Baden-Württemberg
FREIBURG

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

DUITSLAND

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

DUITSLAND

Baden-Württemberg
ULM

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

DUITSLAND

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

DUITSLAND

Niedersachsen
HANNOVER

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

DUITSLAND

Nordrhein-Westfalen
AACHEN

MPN Registry: German MPN Register and Biomaterial Bank for BCR-ABL1-negative myeloid neoplasias
Universitätsklinikum Aachen
Klinik für Onkologie, Hämatologie und Stammzelltransplantation (Med. Klinik IV)

DUITSLAND

Nordrhein-Westfalen
AACHEN

MPN Registry: German MPN Register and Biomaterial Bank for BCR-ABL1-negative myeloid neoplasias (biobank)
Universitätsklinikum Aachen
Klinik für Onkologie, Hämatologie und Stammzelltransplantation (Med. Klinik IV)

DUITSLAND

Nordrhein-Westfalen
MÜNSTER

DUITSLAND

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

FRANKRIJK

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

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

ITALIË

CAMPANIA
NAPOLI

RIAF: Fanconi's Anemia Italian Registry
P.S.I. "Elena d'Aosta"
Laboratorio di Genetica Medica

ITALIË

EMILIA ROMAGNA
BOLOGNA

Italian Thrombocythemia Registry (RIT)
IRCCS Policlinico Sant'Orsola
Università di Bologna

ITALIË

LAZIO
ROMA

Gefinancierd door een IRDiRC-lidParoxysmal Nocturnal Hemoglobinuria Registry
ISS - Istituto Superiore di Sanità
Dipartimento del Farmaco

ITALIË

SICILIA
PALERMO

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

ITALIË

VENETO
VERONA

RI-SDS: Italian Registry of Shwachman Diamond Syndrome
Azienda Ospedaliera Universitaria Integrata di Verona - Ospedale Borgo Trento
Centro Fibrosi Cistica

NEDERLAND

Gelderland
NIJMEGEN

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

NEDERLAND

Noord-Holland
AMSTERDAM

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

NEDERLAND

Noord-Holland
AMSTERDAM

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

NEDERLAND

Noord-Holland
AMSTERDAM

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

OOSTENRIJK

TIROL
INNSBRUCK

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

OOSTENRIJK

WIEN
ADDRESS: NOT PROVIDED - AT

Thromboreductin-Registry
Institution: Information not provided - AT

OOSTENRIJK

WIEN
WIEN

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

OOSTENRIJK

WIEN
WIEN

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

OOSTENRIJK

WIEN
WIEN

PORTUGAL

NORTE
PORTO

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

SPANJE

Castilla - León
SALAMANCA

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

SPANJE

Madrid
MADRID

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

USA

Illinois
CHICAGO

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

USA

Massachusetts
BOSTON

Gefinancierd door een IRDiRC-lidRare Cancer Genetics Registry (RCGR)
Massachusetts General Hospital

USA

New York
NEW YORK

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

VERENIGD KONINKRIJK

Greater Manchester
MANCHESTER

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

VERENIGD KONINKRIJK

West Midlands
BIRMINGHAM

MARS: The Morquio A registry Study
Birmingham Children's Hospital NHS Foundation Trust
Department of Clinical Inherited Metabolic Disorders

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

AP3B1base: Mutation registry for Hermansky-Pudlak syndrome 2
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

CD3Dbase: Mutation registry for Autosomal recessive CD3delta deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

CD3Ebase: Mutation registry for autosomal recessive CD3epsilon immunodeficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

ZWEDEN

Region Skåne
LUND

DCLRE1Cbase: Mutation registry for Artemis deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

GFI1base: Mutation registry for SCN and NI-CINA
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

PTPRCbase: Mutation registry for CD45 deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

SBDSbase: Mutation registry for Shwachman-Diamond syndrome
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

TAZbase: Mutation registry for Barth syndrome
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

MAPBPIPbase: Mutation registry for Endosomal adaptor protein p14 deficiency
Lunds Universitet
Department of Experimental Medical Science

ZWEDEN

Region Skåne
LUND

Swedish Multiple Myeloma Registry
Regionalt cancercentrum syd
Regional Cancer Centre, South Sweden

ZWEDEN

Region Uppsala
UPPSALA

Swedish Chronic Myeloid Leukemia Registry
Akademiska Sjukhuset
Regional Cancer Centre, Mid Sweden

BELGIË

ANTWERPEN
ANTWERPEN

Antwerpen register van aangeboren afwijkingen - bijdrage aan het EUROCAT-netwerk
Provinciaal Instituut voor Hygiëne (PIH)- Antwerpen
EUROCAT Belgium_Antwerpen

BELGIË

HAINAUT
GOSSELIES

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

DUITSLAND

Hessen
FRANKFURT AM MAIN

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

DUITSLAND

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

DUITSLAND

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

DUITSLAND

Mecklenburg-Vorpommern
ROSTOCK

DUITSLAND

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

DUITSLAND

Rheinland-Pfalz
MAINZ

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

DUITSLAND

Sachsen-Anhalt
HALLE (SAALE)

German T-cell lymphoma registry (T-NHL) of the German Lymphoma Alliance
Universitätsklinikum Halle (Saale)
Universitätsklinik und Poliklinik für Innere Medizin IV

DUITSLAND

Sachsen-Anhalt
MAGDEBURG

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

FINLAND

Finland
HELSINKI

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

FRANKRIJK

AUVERGNE-RHONE-ALPES
CLERMONT-FERRAND

CEMC-Auvergne - Center for the Study of Congenital Malformations in Auvergne - contributes to the EUROCAT network
CHU de Clermont-Ferrand - Hôpital d'Estaing
Service de génétique médicale

FRANKRIJK

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

FRANKRIJK

BRETAGNE
RENNES

FRANKRIJK

BRETAGNE
RENNES

ReMaBreizh: Registry of congenital malformations in Brittany
CHU de Rennes - Hôpital Pontchaillou
CHU Rennes

FRANKRIJK

ILE-DE-FRANCE
PARIS

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

FRANKRIJK

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

FRANKRIJK

ILE-DE-FRANCE
PARIS

FRANKRIJK

ILE-DE-FRANCE
PARIS

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

FRANKRIJK

NOUVELLE AQUITAINE
BORDEAUX

GFELC registry: French primary cutaneous lymphoma registry
CHU de Bordeaux - Hôpital Saint André
Unité de Dermatologie Cancérologie

FRANKRIJK

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

FRANKRIJK

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)

FRANKRIJK

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

IERLAND

County Cork
CORK

IERLAND

County Dublin
DUBLIN

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

IERLAND

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

ITALIË

CAMPANIA
BENEVENTO

Campania registry of congenital anomalies - contributes to the EUROCAT network
A.O.R.N. "San Pio" - P.O. "G. Rummo"
U.O.S.D. di Genetica Medica

ITALIË

PUGLIA
VALENZANO

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

ITALIË

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

ITALIË

TOSCANA
FIRENZE

Italian LCH Registry - Langerhans cell histiocytosis
Azienda Ospedaliera Universitaria Anna Meyer
D.A.I. Oncologia, Ematologia, TCSE e Terapia Genica

ITALIË

TOSCANA
PISA

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

NEDERLAND

Groningen
GRONINGEN

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

OOSTENRIJK

SALZBURG
SALZBURG

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

OOSTENRIJK

WIEN
WIEN

OOSTENRIJK

WIEN
WIEN

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

POLEN

Poznan
POZNAN

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

PORTUGAL

SUL
LISBOA

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

SPANJE

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

SPANJE

Madrid
MADRID

Spanish registry of pulmonary Langerhans cell histiocytosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPANJE

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

ZWEDEN

Region Skåne
LUND

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

ZWEDEN

Region Skåne
LUND

Swedish Acute Lymphoblastic Leukemia Registry
Skånes Universitetssjukhus
Skåne University Hospital

ZWITSERLAND

Suisse Romande
LAUSANNE

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

DUITSLAND

Baden-Württemberg
ULM

German marginal zone lymphoma registry of the German Lymphoma Alliance
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

DUITSLAND

Baden-Württemberg
ULM

German follicular lymphoma registry of the German Lymphoma Alliance
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

DUITSLAND

Rheinland-Pfalz
MAINZ

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

DUITSLAND

Rheinland-Pfalz
MAINZ

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

OOSTENRIJK

WIEN
WIEN

Netwerken van registers en biobanken

MALTA

MALTA
MALTA

EuroBioBank: European Network of DNA, Cell and Tissue banks for rare diseases
  • Universita ta Malta
  • Molecular Genetics Laboratory
  • VERENIGD KONINKRIJK

    Greater London
    LONDON

    European Society for Blood and Marrow Transplant Society Registry (EBMT registry)
  • Guy's Hospital
  • European Society for Blood and Marrow Transplant Society
  • DUITSLAND

    Niedersachsen
    HANNOVER

    Gefinancierd door een IRDiRC-lidSCNIR: Severe Chronic Neutropenia International Registry
  • Medizinische Hochschule Hannover
  • SCNIR - Europazentrale
  • DUITSLAND

    Nordrhein-Westfalen
    KÖLN

    OxalEurope Registry (OER)
  • Institut für Humangenetik am Universitätsklinikum Köln
  • Institut für Humangenetik
  • VERENIGD KONINKRIJK

    Hertfordshire
    HARPENDEN

    Gefinancierd door een IRDiRC-lidInternational A-T Registry
  • AT Society
  • A-T Patient Registry
  • VERENIGD KONINKRIJK

    West Yorkshire
    LEEDS

    EUMDS : European Myelodysplastic Syndromes Registry
  • Leeds General Infirmary
  • Department of Haematology
  • CANADA

    Ontario
    TORONTO

    IRHDR Registry: International Rare Histiocytic Disorders Registry
  • The Hospital for Sick Children (SickKids)
  • Department of Paediatrics
  • ITALIË

    LOMBARDIA
    VARESE

    Gefinancierd door een IRDiRC-lidEUROCAT: European surveillance of congenital anomalies
  • European Commission's Joint Research Centre in Ispra
  • European Commission's Joint Research Centre