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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

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

FRANCE

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

FRANCE

ILE-DE-FRANCE
PARIS

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

GERMANY

Baden-Württemberg
FREIBURG

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

GERMANY

Baden-Württemberg
FREIBURG

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

GERMANY

Baden-Württemberg
ULM

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

GERMANY

Niedersachsen
HANNOVER

GERMANY

Nordrhein-Westfalen
KÖLN

Funded by an IRDiRC memberTumor bank for embryonal tumors
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

GERMANY

Nordrhein-Westfalen
KÖLN

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

GERMANY

Schleswig-Holstein
KIEL

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

ITALY

LAZIO
ROMA

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

ITALY

TOSCANA
PISA

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

ITALY

VENETO
PADOVA

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

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
Subdirección Técnica Asesora de Gestión de la Información

SPAIN

Aragón
ZARAGOZA

Funded by an IRDiRC memberRare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria

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)
Generalitat Valenciana. Conselleria de Sanitat Universal i Salut Pública
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles

SPAIN

Extremadura
MÉRIDA

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

SPAIN

Galicia
SANTIAGO DE COMPOSTELA

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

SPAIN

Madrid
MADRID

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

SPAIN

Madrid
MADRID

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

SPAIN

Madrid
MADRID

Funded by an IRDiRC memberRePER: Rare Diseases Patient Registry
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

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

SPAIN

País Vasco
BARAKALDO

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

SPAIN

País Vasco
VITORIA-GASTEIZ

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

UNITED KINGDOM

Greater Manchester
ADDRESS: NOT PROVIDED - UK

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

UNITED STATES

South Dakota
SIOUX FALLS

AUSTRALIA

Victoria
MEKBOURNE

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

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

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 in Bulgaria
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

Capital City Prague
PRAHA

FINLAND

Finland
TURKU

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

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)

FRANCE

ILE-DE-FRANCE
VILLEJUIF

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

FRANCE

ILE-DE-FRANCE
VILLEJUIF

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

FRANCE

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

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

GERMANY

Baden-Württemberg
FREIBURG

GERMANY

Baden-Württemberg
FREIBURG

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

GERMANY

Baden-Württemberg
FREIBURG

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

GERMANY

Baden-Württemberg
HEIDELBERG

Rare anaemia Registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg

GERMANY

Baden-Württemberg
HEIDELBERG

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

GERMANY

Baden-Württemberg
MANNHEIM

Register for rare myeloproliferative neoplasms
Universitätsmedizin Mannheim
III. Medizinische Klinik

GERMANY

Bayern
WÜRZBURG

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

GERMANY

Hamburg
HAMBURG

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

GERMANY

Hamburg
HAMBURG

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

GERMANY

Hamburg
HAMBURG

Funded by an IRDiRC memberHunter Outcome Survey (HOS): patient registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANY

Hessen
FRANKFURT AM MAIN

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

GERMANY

Hessen
MARBURG

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

GERMANY

Niedersachsen
HANNOVER

GERMANY

Niedersachsen
HANNOVER

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

GERMANY

Niedersachsen
HANNOVER

SCNIR (Severe Chronic Neutropenia International Registry) : Neutropenia biobank
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

GERMANY

Rheinland-Pfalz
MAINZ

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

GREECE

ATTIKI
ATHENS

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

Funded by an IRDiRC memberHunter 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
Ente Ospedaliero Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche

ITALY

LOMBARDIA
PAVIA

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

ITALY

LOMBARDIA
PAVIA

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

ITALY

LOMBARDIA
RANICA

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

ITALY

SICILIA
PALERMO

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

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

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

ITALY

TOSCANA
FIRENZE

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

NETHERLANDS

Gelderland
NIJMEGEN

Funded by an IRDiRC memberERN [GENTURIS] - GENTURIS registry: The Genetic Tumour Risk Syndromes Registry
Radboudumc - Radboud universitair medisch centrum
Sectie Klinische Genetica

NETHERLANDS

Noord-Holland
AMSTERDAM

The MLD initiative
Amsterdam UMC
Afdeling Kinderneurologie

NETHERLANDS

Noord-Holland
AMSTERDAM

Dutch patient registry for Fabry disease
Amsterdam UMC
Afdeling Erfelijke Stofwisselingsziekten

NETHERLANDS

Noord-Holland
AMSTERDAM

Dutch patient registry for Gaucher disease
Amsterdam UMC
Afdeling Erfelijke Stofwisselingsziekten

NETHERLANDS

Noord-Holland
AMSTERDAM

The MLD initiative
Amsterdam UMC
Afdeling Erfelijke Stofwisselingsziekten

NETHERLANDS

Noord-Holland
AMSTERDAM

NETHERLANDS

Noord-Holland
AMSTERDAM

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Utrecht
UTRECHT

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

NORWAY

Østlandet
OSLO

Norwegian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Oslo University Hospital, 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)
Centro Hospitalar e Universitário de Coimbra, EPE - H. Pediátrico e H. Covões
Serviço de Hematologia Clínica

SERBIA

Serbia
BELGRADE

SPAIN

Aragón
ZARAGOZA

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

SPAIN

Baleares
PALMA DE MALLORCA

Funded by an IRDiRC memberRERIB: Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Consejería de Salud y Consumo
Servicio de Epidemiología

SPAIN

Castilla - León
SALAMANCA

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

SPAIN

Cataluña
BARCELONA

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

SPAIN

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

SPAIN

Madrid
MADRID

Funded by an IRDiRC memberSIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Direccion General de Salud Publica
Subdirección General de Vigilancia en Salud Pública

SPAIN

Madrid
MADRID

Registro de Neutropenia Crónica Grave - contribuye al SCN international registry (SCNIR)
Hospital Universitario La Paz
Servicio de Hemato-Oncología pediátrica

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

Swedish Acute Myelogenous Leukemia Registry
Skånes Universitetssjukhus
Skåne University Hospital

SWEDEN

Region Stockholm
HUDDINGE

SWEDEN

Region Stockholm
SOLNA

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

SWITZERLAND

Suisse Alémanique
BERN

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

SWITZERLAND

Suisse Alémanique
BERN

Swiss Fabry Registry
Universitätsspital Inselspital
Universitätsklinik für Nephrologie und Hypertonie

SWITZERLAND

Suisse Alémanique
ZÜRICH

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

SWITZERLAND

Suisse Romande
LAUSANNE

Swiss Fabry Registry
Swiss Foundation of Fabry Disease
Swiss Fabry Registry

TURKEY

TURKEY
ANKARA

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

UNITED KINGDOM

Greater London
LONDON

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

UNITED KINGDOM

Hertfordshire
HARPENDEN

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

UNITED KINGDOM

Surrey
SUTTON

UNITED KINGDOM

Tyne & Wear
WASHINGTON

Funded by an IRDiRC memberINPDR : International Niemann-Pick Disease Registry
Niemann-Pick (UK)
INPDR Registry

UNITED KINGDOM

West Yorkshire
LEEDS

UNITED KINGDOM

West Yorkshire
LEEDS

UNITED STATES

Pennsylvania
UNIVERSITY PARK

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

AUSTRALIA

Victoria
MEKBOURNE

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

AUSTRIA

TIROL
INNSBRUCK

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

AUSTRIA

WIEN
ADDRESS: NOT PROVIDED - AT

Thromboreductin-Registry
Institution: Information not provided - AT

AUSTRIA

WIEN
WIEN

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

AUSTRIA

WIEN
WIEN

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

AUSTRIA

WIEN
WIEN

BELGIUM

OOST-VLAANDEREN
GENT

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

BULGARIA

 South Central region
PLOVDIV

National registry of 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

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

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
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)

GERMANY

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)

GERMANY

Nordrhein-Westfalen
MÜNSTER

GERMANY

Nordrhein-Westfalen
MÜNSTER

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

ITALY

CAMPANIA
NAPOLI

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

ITALY

EMILIA ROMAGNA
BOLOGNA

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

ITALY

LAZIO
ROMA

Funded by an IRDiRC memberParoxysmal Nocturnal Hemoglobinuria Registry
ISS - Istituto Superiore di Sanità
Dipartimento del Farmaco

ITALY

SICILIA
PALERMO

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

ITALY

VENETO
VERONA

RI-SDS: Italian Registry of 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
Afdeling Erfelijke Stofwisselingsziekten

NETHERLANDS

Noord-Holland
AMSTERDAM

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

NETHERLANDS

Noord-Holland
AMSTERDAM

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

PORTUGAL

NORTE
PORTO

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

SPAIN

Castilla - León
SALAMANCA

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

SPAIN

Madrid
MADRID

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

Svenska myelomregistret
Regionalt cancercentrum syd
Regional Cancer Centre, South Sweden

SWEDEN

Region Uppsala
UPPSALA

Nationellt kvalitetsregister för KML
Akademiska Sjukhuset
Regional Cancer Centre, Mid Sweden

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

West Midlands
BIRMINGHAM

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

UNITED STATES

Illinois
CHICAGO

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

UNITED STATES

Massachusetts
BOSTON

Funded by an IRDiRC memberRare Cancer Genetics Registry (RCGR)
Massachusetts General Hospital

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

WIEN
WIEN

AUSTRIA

WIEN
WIEN

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

BELGIUM

ANTWERPEN
ANTWERPEN

Antwerp 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 - contribution to the EUROCAT network
Institut de Pathologie et de Génétique
Département de Génétique Clinique - Institut de Pathologie et de Génétique (IPG)

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

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

FRANCE

AUVERGNE-RHONE-ALPES
LYON

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

FRANCE

BRETAGNE
RENNES

FRANCE

BRETAGNE
RENNES

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

FRANCE

ILE-DE-FRANCE
PARIS

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

FRANCE

ILE-DE-FRANCE
PARIS

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

FRANCE

ILE-DE-FRANCE
PARIS

FRANCE

ILE-DE-FRANCE
PARIS

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

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

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

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

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

FRANCE

OUTRE-MER
FORT DE FRANCE

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

FRANCE

OUTRE-MER
SAINT-PIERRE

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

GERMANY

Hessen
FRANKFURT AM MAIN

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

GERMANY

Hessen
FRANKFURT AM MAIN

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

GERMANY

Hessen
FRANKFURT AM MAIN

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

GERMANY

Mecklenburg-Vorpommern
ROSTOCK

GERMANY

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
HALLE (SAALE)

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

GERMANY

Sachsen-Anhalt
MAGDEBURG

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

IRELAND

County Cork
CORK

IRELAND

County Dublin
DUBLIN

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

IRELAND

County Kilkenny
KILKENNY

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

ITALY

CAMPANIA
BENEVENTO

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

ITALY

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

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. Oncologia, Ematologia, TCSE e Terapia Genica

ITALY

TOSCANA
PISA

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

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 (registo integrado na rede EUROCAT)
Instituto Nacional de Saúde Dr. Ricardo Jorge - Lisboa
Departamento de Epidemiologia

SPAIN

Madrid
MADRID

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

SPAIN

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

SPAIN

País Vasco
VITORIA-GASTEIZ

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

SWEDEN

Region Skåne
LUND

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

SWEDEN

Region Skåne
LUND

Swedish Acute Lymphoblastic Leukemia Registry
Skånes Universitetssjukhus
Skåne University Hospital

SWITZERLAND

Suisse Romande
LAUSANNE

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

GERMANY

Baden-Württemberg
ULM

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

GERMANY

Baden-Württemberg
ULM

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

GERMANY

Rheinland-Pfalz
MAINZ

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

GERMANY

Rheinland-Pfalz
MAINZ

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

Networks of registries and biobanks

MALTA

MALTA
MALTA

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

    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
  • GERMANY

    Niedersachsen
    HANNOVER

    Funded by an IRDiRC memberSCNIR: Internationales Register für schwere chronische Neutropenien
  • Medizinische Hochschule Hannover
  • SCNIR - Europazentrale
  • GERMANY

    Nordrhein-Westfalen
    KÖLN

    OxalEurope Registry (OER)
  • Institut für Humangenetik am Universitätsklinikum Köln
  • Institut für Humangenetik
  • UNITED KINGDOM

    Hertfordshire
    HARPENDEN

    Funded by an IRDiRC memberInternational A-T Registry
  • AT Society
  • A-T Patient Registry
  • UNITED KINGDOM

    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
  • ITALY

    LOMBARDIA
    VARESE

    Funded by an IRDiRC memberEUROCAT: European surveillance of congenital anomalies
  • European Commission's Joint Research Centre in Ispra
  • European Commission's Joint Research Centre