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Registries and Biobanks

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases

FINLAND

Finland
HELSINKI

The Finnish Hematology Registry and Clinical Biobank (FHRB Biobank)
HUS - Helsinki University Hospital
Hematology Clinic

FRANCE

ILE-DE-FRANCE
PARIS

French National Registry for Rare Diseases (BNDMR)
AP-HP Campus Picpus - Département WIND (Web Innovation Données)
Banque Nationale de Données Maladies Rares (BNDMR)

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

Cataluña
BARCELONA

Funded by an IRDiRC memberERN [EuroBloodNet] - ENROL: European Rare Blood Disorders Platform
Vall d'Hebron Institut de Recerca VHIR
Grupo de investigación traslacional en cáncer en la infancia y la adolescencia

SPAIN

Cataluña
ESPLUGUES DE LLOBREGAT

Biobank of the Sant Joan de Déu Children's Hospital for Research (BHISJDI)
Fundació Sant Joan de Déu - Institut de Recerca Sant Joan de Déu
Biobanco del Hospital Infantil Sant Joan de Déu para la investigación

SPAIN

Comunidad Valenciana
VALENCIA

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

SPAIN

Extremadura
MÉRIDA

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

SPAIN

Galicia
SANTIAGO DE COMPOSTELA

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

SPAIN

Madrid
MADRID

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

SPAIN

Madrid
MADRID

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

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

SWITZERLAND

Suisse Alémanique
BERN

Swiss Rare Disease Registry (SRSK)
Institute of Social and Preventive Medicine (ISPM)

SWITZERLAND

Suisse Alémanique
ZÜRICH

Swiss Rare Disease Registry (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten

NETHERLANDS

Gelderland
NIJMEGEN

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

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

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

BELGIUM

VLAAMS BRABANT
LEUVEN

Belgian contribution to the international rare bleeding disorders registry (RBDD)
UZ Leuven - Campus Gasthuisberg
Center for Molecular and Vascular Biology

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
HEIDELBERG

Rare anaemia Registry
Deutsches Krebsforschungszentrum
KITZ - Hopp-Kindertumorzentrum Heidelberg

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)

GREECE

GREECE
ATHENS

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

ITALY

LOMBARDIA
MILANO

International Registry of Rare Bleeding Disorders (RBDD)
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
Laboratorio di Patologie Molecolari Applicate alla Clinica

NETHERLANDS

Zuid-Holland
LEIDEN

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

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

SWITZERLAND

Suisse Alémanique
ZÜRICH

Swiss Hemophilia Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung Hämatologie

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

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

Hessen
LANGEN

German Haemophilia Registry (DHR)
Paul-Ehrlich-Institut
Deutsches Hämophilieregister

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

ITALY

LAZIO
ROMA

National Registry of congenital bleeding disorders
ISS - Istituto Superiore di Sanità
Dipartimento di Ematologia, Oncologia e Medicina Molecolare

NETHERLANDS

Zuid-Holland
LEIDEN

Funded by an IRDiRC memberHemoNED: Dutch Hemophilia Registry
LUMC - Leids Universitair Medisch Centrum
Stichting HemoNED

UNITED KINGDOM

Greater Manchester
MANCHESTER

National haemophilia database (NHD)
City View House
UK Haemophilia Centre Doctors' Organisation

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

AUSTRIA

STEIERMARK
GRAZ

Severe Immune Cytopenia Registry
Medizinische Universität Graz
Klinische Abteilung für pädiatrische Hämato-Onkologie

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

CYPRUS

Cyprus
NICOSIA

Registry for Haemoglobinopathies
Cyprus Thalassaemia Centre

FRANCE

AUVERGNE-RHONE-ALPES
PRAGUE

Czech national Diamond-Blackfan Anemia Registry
Faculty of Medicine and University Hospital Motol
Department of Pediatrics

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
CRÉTEIL

French cohort of acquired autoimmune haemolytic anemia
Hôpitaux Universitaires Henri Mondor
Service de Médecine interne

FRANCE

ILE-DE-FRANCE
SAINT-MAURICE

FRANCE

NOUVELLE AQUITAINE
BORDEAUX

French prospective cohort follow-up of children under the age of 18 with autoimmune cytopenia
CHU de Bordeaux-GH Pellegrin
Consultation d'onco-hématologie pédiatrique

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
ULM

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

GERMANY

Niedersachsen
HANNOVER

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

IRELAND

County Dublin
DUBLIN

National Haemophilia Register - Ireland
St James's Hospital
National Centre for Hereditary Coagulation Disorders Registry

ITALY

CAMPANIA
NAPOLI

International Registry of congenital dyserythropoietic anemia II
Biotecnologie Avanzate Srl
Area Funzionale di Genetica Medica

ITALY

CAMPANIA
NAPOLI

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

ITALY

EMILIA ROMAGNA
PARMA

Registry of inherited bleeding disorders in Emilia Romagna region
Azienda Ospedaliero-Universitaria di Parma
Dipartimento di Medicina 2

ITALY

LAZIO
ROMA

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

ITALY

LIGURIA
GENOVA

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

ITALY

LOMBARDIA
MILANO

TTP: International registry on thrombotic thrombocytopenic purpura
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
Laboratorio di Patologie Molecolari Applicate alla Clinica

ITALY

LOMBARDIA
PAVIA

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

ITALY

LOMBARDIA
RANICA

Funded by an IRDiRC memberInternational registry of recurrent and familial hemolytic uremic syndrome/thrombotic thrombocytopenic purpura
Istituto di Ricerche Farmacologiche Mario Negri
Centro di Ricerche Cliniche per le Malattie Rare

ITALY

SICILIA
PALERMO

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

ITALY

VENETO
PADOVA

ITALY

VENETO
VERONA

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

POLAND

Lodz
LODZ

Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
Uniwersytecki Szpital Kliniczny nr 4 im. Marii Konopnickiej
Pracownia Immunopatologii I Genetyki - Laboratory of Immunopathology and Genetics

POLAND

Lodz
LODZ

Registry for Wolfram syndrome, Astrom syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes contributing do EURO-WABB
Uniwersytecki Szpital Kliniczny nr 4 im. Marii Konopnickiej
Departament of Pediatrics, Oncology, Hematology and Diabetology

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

Cataluña
BELLATERRA

DNA repair biobank
Universitat Autònoma de Barcelona
Servicio de análisis de Fragilidad Cromosómica

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

DKC1base: Mutation registry for Hoyeraal-Hreidarsson syndrome and dyskeratosis congenita
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

UNITED KINGDOM

Greater London
LONDON

The United Kingdom Thrombotic Thrombocytopenic Purpura Registry (UK TTP Registry)
Joint UCLH/UCL Biomedical Research and Development (R&D) Unit
University College London (UCL) and University College London Hospitals NHS Trust (UCLH)

UNITED KINGDOM

Greater London
LONDON

UK Thrombotic Thrombocytopenic Purpura (UKTTP) Registry
UCL University College London, Bloomsbury Campus
Haemostasis Research Unit

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

AUSTRALIA

Queensland
HERSTON

Australian Bleeding Disorders Registry (ABDR)
Royal Brisbane & Women's Hospital
Queensland Haemophilia Centre

AUSTRALIA

Victoria
MEKBOURNE

Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRIA

WIEN
ADDRESS: NOT PROVIDED - AT

Thromboreductin-Registry
Institution: Information not provided - AT

AUSTRIA

WIEN
WIEN

Austrian Hemophilia Registry - Registry for patients with inborn coagulation defects
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

AUSTRIA

WIEN
WIEN

Upshaw-Schulman-Syndrome registry
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

AUSTRIA

WIEN
WIEN

International aHUS registry
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

AUSTRIA

WIEN
WIEN

Austrian Registry on Acquired Hemophilia
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

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

FRANCE

AUVERGNE-RHONE-ALPES
ADDRESS: NOT PROVIDED - FR

The global aHUS Registry
Institution: Information not provided - FR

FRANCE

AUVERGNE-RHONE-ALPES
BRON

Variant human fibrinogen database
CHU de Lyon HCL - GH Est
Laboratoire d'hématologie

FRANCE

BRETAGNE
RENNES

French registry of Iron overload genetic rare diseases, non-related to the HFE gene
CHU de Rennes - Hôpital Pontchaillou
Service des maladies du foie

FRANCE

ILE-DE-FRANCE
PARIS

French Registry of Atypical Hemolytic Uremic Syndrome (aHUS) in Children
AP-HP. Centre - Université de Paris - HEGP Hôpital Européen Georges Pompidou
Laboratoire d'Immunologie biologique

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
HEIDELBERG

iNTD (International Working Group on Neurotransmitter Related Disorders) Registry
Dietmar-Hopp-Stoffwechselzentrum
Klinik Kinderheilkunde I - Dietmar-Hopp-Stoffwechselzentrum

GERMANY

Baden-Württemberg
HEIDELBERG

Funded by an IRDiRC memberEIMD: European registry and network for intoxication type metabolic diseases
Zentrum für Kinder- und Jugendmedizin des Universitätsklinikums Heidelberg
Klinik für Kinderheilkunde I - Sektion für Neuropädiatrie und Stoffwechselmedizin

GERMANY

Hessen
FRANKFURT AM MAIN

GERMANY

Niedersachsen
HANNOVER

GERMANY

Niedersachsen
HANNOVER

German registry for congenital thrombocytopenia
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie

GERMANY

Nordrhein-Westfalen
MÜNSTER

HUSEC reference strain collection
Universität Münster
Konsiliarlabor für Hämolytisch-Urämisches Syndrom (HUS)

IRELAND

County Dublin
DUBLIN

Funded by an IRDiRC memberIrish Registry for homocystinurias and methylation defects - contributes to E-HOD
Children's Health Ireland @ Temple Street
National Centre for Inherited Metabolic Disorders

ITALY

LAZIO
ROMA

Italian registry of hemolytic uremic syndrome
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare

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

PUGLIA
VALENZANO

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

ITALY

UMBRIA
PERUGIA

AICE: Italian registry of hemophilia centre
Università degli Studi di Perugia - Ospedale S. Maria della Misericordia
Dipartimento di Medicina Interna

NETHERLANDS

Noord-Holland
AMSTERDAM

NETHERLANDS

Zuid-Holland
LEIDEN

EPCOT: European prospective cohort on thrombophilia
LUMC - Leids Universitair Medisch Centrum
Afdeling Klinische Epidemiologie

SERBIA

Serbia
BELGRADE

Serbian registry of patients with rare bleeding disorders - contributes to the RBDD international registry
Blood Transfusion Institute of Serbia
Hemostasis Department and Hemophilia Center

SERBIA

Serbia
BELGRADE

Serbian registry of hemophilia and von Willebrand disease patients
Blood Transfusion Institute of Serbia
Hemostasis Department and Hemophilia Center

SPAIN

Cataluña
BARCELONA

Hemobase: Hemophilia mutations registry in Spanish population
Banc de Sang i Teixits. Edifici Dr. Frederic Duran i Jordà
Unidad de Diagnóstico y Terapia Molecular

SPAIN

Cataluña
BARCELONA

Spanish Von Willebrand Factor mutation database
Banc de Sang i Teixits. Edifici Dr. Frederic Duran i Jordà
Unidad de Diagnóstico y Terapia Molecular

SPAIN

Madrid
MADRID

aHUS/C3G: Atypical Hemolytic Uremic Syndrome (aHUS) and C3 Glomerulopathy (C3G) Database
Centro de Investigaciones Biológicas (CSIC)
Departamento de Medicina Celular y Molecular

SPAIN

País Vasco
DERIO

Human Uroporphyrinogen III Synthase mutant collection
Centro de Investigación Cooperativa en Biociencias (CIC bioGUNE)
Centro de Investigación Cooperativa en Biociencias

SPAIN

País Vasco
DERIO

Human Uroporphyrinogen III Synthase mutant collection
Centro de Investigación Cooperativa en Biociencias (CIC bioGUNE)
Unidad de Biología Estructural

SWEDEN

Region Skåne
LUND

TCN2base: Mutation registry for Transcobalamin II deficiency
Lunds Universitet
Department of Experimental Medical Science

SWEDEN

Region Skåne
LUND

CD59base: Mutation registry for CD59 deficiency
Lunds Universitet
Department of Experimental Medical Science

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

Hereditary TTP Registry
Universitätsspital Inselspital
Department of Hematology and Central Hematology Laboratory

TURKEY

TURKEY
ANKARA

Turkish pediatric atypical hemolytic uremic syndrome registry
Hacettepe University Faculty of Medicine
Department of Pediatrics Nephrology and Rheumatology

UNITED KINGDOM

Cambridgeshire
CAMBRIDGE

Serpin-related disease mutation registry Database
Cambridge Institute for Medical Research, Cambridge University
Structural Medicine

UNITED KINGDOM

Cheshire
KNUTSFORD

UNITED KINGDOM

Greater London
LONDON

UKFITPR: United Kingdom familial idiopathic thrombocytopenic purpura (ITP) Registry
Barts Health NHS trust - The Royal London Hospital-Pathology Pharmacy Building
Department of Haematology

UNITED KINGDOM

Greater London
LONDON

UKESR: United Kingdom Evans syndrome registry
Barts Health NHS trust - The Royal London Hospital-Pathology Pharmacy Building
Department of Haematology

UNITED KINGDOM

South Yorkshire
SHEFFIELD

Von Willebrand Factor mutation database: VWF gene
The Medical School - University of Sheffield
Department of Cardiovascular Science

UNITED KINGDOM

West Midlands
BIRMINGHAM

Funded by an IRDiRC memberEIMD: European registry and network for intoxication type metabolic diseases
Birmingham Children's Hospital NHS Foundation Trust
Department of Clinical Inherited Metabolic Disorders

AUSTRIA

WIEN
WIEN

Ceprotin Treatment Registry
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

CANADA

Québec
MONTRÉAL

World Bleeding Disorders Registry
World Federation of Hemophilia

GERMANY

Mecklenburg-Vorpommern
GREIFSWALD

STER: FVII deficiency treatment international registry
Institut für Humangenetik der Universitätsmedizin Greifswald
Institut für Humangenetik

GERMANY

Nordrhein-Westfalen
MÜNSTER

ITALY

PUGLIA
SAN GIOVANNI ROTONDO

GLATIT: Glanzmann thrombasthenia Italian registry
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
U.O. di Emostasi e Trombosi

NETHERLANDS

Utrecht
BAARN

PedNet Haemophilia Registry
PedNet Haemophilia Research Foundation

SPAIN

Cataluña
BARCELONA

Funded by an IRDiRC memberEUROMAC: Registry of patients affected by McArdle Disease
Vall d'Hebron Institut de Recerca VHIR
Grupo de investigación en patología neuromuscular y mitocondrial

SWEDEN

Region Skåne
LUND

C3base: Mutation registry for C3 deficiency
Lunds Universitet
Department of Experimental Medical Science

SWEDEN

Region Skåne
LUND

CFHbase: Mutation registry for Factor H deficiency (previously known as HF1base)
Lunds Universitet
Department of Experimental Medical Science

SWEDEN

Region Skåne
LUND

CFIbase: Mutation registry for Factor I deficiency (previously known as IFbase)
Lunds Universitet
Department of Experimental Medical Science

SWITZERLAND

Suisse Alémanique
BASEL

Intercontinental Cooperative ITP Study Group Registry
Universitäts-Kinderspital beider Basel UKBB
Abteilung Onkologie / Haematologie

UNITED KINGDOM

Greater London
LONDON

UKAITPR: UK Adult ITP Registry
Barts Health NHS trust - The Royal London Hospital-Pathology Pharmacy Building
Department of Haematology

UNITED KINGDOM

Greater London
LONDON

UKAITPR: UK Adult ITP Registry
Queen Mary University of London Headquarters

UNITED KINGDOM

Greater Manchester
MANCHESTER

The UK Paediatric ITP Registry
Manchester University NHS Foundation Trust - Manchester Royal Infirmary
Immune Thrombocytopenic Purpura (ITP) Clinic

UNITED KINGDOM

Greater Manchester
MANCHESTER

UK Paediatric ITP (Immune Thrombocytopenic Purpura) Registry
Royal Manchester Children's Hospital
Medical Pathology

UNITED STATES

Georgia
ATLANTA

CHAMP: CDC Hemophilia A Mutation Project
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Division of Blood Disorders

GERMANY

Bayern
MÜNCHEN

MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik

ITALY

LOMBARDIA
PAVIA

Italian registry for MYH9-related thrombocytopenia
Fondazione IRCCS Policlinico San Matteo
Clinica Medica III

UNITED KINGDOM

Tyne & Wear
NEWCASTLE UPON TYNE

International GNE Myopathy Patient Registry
Newcastle University
John Walton Muscular Dystrophy Research Centre, Institute for Genetic Medicine

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

WASbase: Mutation registry for Wiskott-Aldrich syndrome (WAS)
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

Networks of registries and biobanks

UNITED KINGDOM

West Midlands
BIRMINGHAM

GERMANY

Baden-Württemberg
HEIDELBERG

iNTD Network - International Working Group on Neurotransmitter Related Disorders
  • Dietmar-Hopp-Stoffwechselzentrum
  • Klinik Kinderheilkunde I - Dietmar-Hopp-Stoffwechselzentrum
  • NETHERLANDS

    Noord-Holland
    AMSTERDAM

    Funded by an IRDiRC memberE-HOD - European network and registry for homocystinurias and methylation defects
  • Amsterdam UMC, locatie VUmc
  • Afdeling Interne Geneeskunde