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Registos e biobancos
BELGICA
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Central Registry of Rare Diseases (CRRD)
Sciensano
Health Services Research - Rare Diseases
BELGICA
VLAAMS BRABANT
LEUVEN
Belgian contribution to the international rare bleeding disorders registry (RBDD)
UZ Leuven - Campus Gasthuisberg
Center for Molecular and Vascular Biology
ESPANHA
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
ESPANHA
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria
ESPANHA
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
ESPANHA
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
ESPANHA
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
ESPANHA
Cataluña
BARCELONA
ERN [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
ESPANHA
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
ESPANHA
Comunidad Valenciana
VALENCIA
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras
ESPANHA
Extremadura
MÉRIDA
Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología
ESPANHA
Galicia
SANTIAGO DE COMPOSTELA
RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial
ESPANHA
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
ESPANHA
Madrid
MADRID
ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
ESPANHA
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
ESPANHA
Navarra
PAMPLONA
Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles
FINLANDIA
Finland
HELSINKI
The Finnish Hematology Registry and Clinical Biobank (FHRB Biobank)
HUS - Helsinki University Hospital
Hematology Clinic
FRANCA
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)
ITALIA
LOMBARDIA
MILANO
International Registry of Rare Bleeding Disorders (RBDD)
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
Laboratorio di Patologie Molecolari Applicate alla Clinica
SUICA
Suisse Alémanique
BERN
Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)
SUICA
Suisse Alémanique
ZÜRICH
Swiss Hemophilia Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung Hämatologie
SUICA
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
ALEMANHA
Hessen
LANGEN
German Haemophilia Registry (DHR)
Paul-Ehrlich-Institut
Deutsches Hämophilieregister
REINO UNIDO
Greater Manchester
MANCHESTER
National haemophilia database (NHD)
City View House
UK Haemophilia Centre Doctors' Organisation
FRANCA
ILE-DE-FRANCE
SAINT-MAURICE
FranceCoag: French prospective cohort of patients affected with haemophilia or severe form of other hereditary hemorrhagic diseases except platelet disorders
INVS - Institut National de Veille Sanitaire
Département des maladies chroniques et des traumatismes
IRLANDA
County Dublin
DUBLIN
National Haemophilia Register - Ireland
St James's Hospital
National Centre for Hereditary Coagulation Disorders Registry
ITALIA
EMILIA ROMAGNA
PARMA
Registry of inherited bleeding disorders in Emilia Romagna region
Azienda Ospedaliero-Universitaria di Parma
Dipartimento di Medicina 2
ITALIA
LOMBARDIA
MILANO
TTP: International registry on thrombotic thrombocytopenic purpura
Fondazione IRCCS Ca' Granda - Ospedale Maggiore Policlinico
Laboratorio di Patologie Molecolari Applicate alla Clinica
ITALIA
LOMBARDIA
RANICA
International 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
REINO UNIDO
Greater London
LONDON
UK Thrombotic Thrombocytopenia Purpura (UKTTP) Registry
UCL University College London, Bloomsbury Campus
Haemostasis Research Unit
ALEMANHA
Hessen
FRANKFURT AM MAIN
MAISTHRO-Registry : multicentric thrombophilia registry (MAIn-ISar-THROmbose-Register)
Cardioangiologisches Centrum Bethanien
ALEMANHA
Niedersachsen
HANNOVER
German registry for congenital thrombocytopenia
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie
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
Austrian Registry on Acquired Hemophilia
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie
ESPANHA
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
ESPANHA
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
FRANCA
AUVERGNE-RHONE-ALPES
BRON
Variant human fibrinogen database
CHU de Lyon HCL - GH Est
Laboratoire d'hématologie
FRANCA
ILE-DE-FRANCE
PARIS
European prospective registry of children born to mothers affected by the antiphospholipids syndrome
Cabinet Médical Jarente
Service de Pédiatrie - Consultation de Génétique médicale et clinique
FRANCA
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
ITALIA
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
ITALIA
UMBRIA
PERUGIA
AICE: Italian registry of hemophilia centre
Università degli Studi di Perugia - Ospedale S. Maria della Misericordia
Dipartimento di Medicina Interna
PAISES BAIXOS
Zuid-Holland
LEIDEN
EPCOT: European prospective cohort on thrombophilia
LUMC - Leids Universitair Medisch Centrum
Afdeling Klinische Epidemiologie
REINO UNIDO
Cambridgeshire
CAMBRIDGE
Serpin-related disease mutation registry Database
Cambridge Institute for Medical Research, Cambridge University
Structural Medicine
REINO UNIDO
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
REINO UNIDO
South Yorkshire
SHEFFIELD
Von Willebrand Factor mutation database: VWF gene
The Medical School - University of Sheffield
Department of Cardiovascular Science
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
SUICA
Suisse Alémanique
BERN
Hereditary TTP Registry
University Hospital Inselspital
Department of Hematology and Central Hematology Laboratory
ALEMANHA
Baden-Württemberg
FREIBURG
GAIN: Patient Registry of the German Network for the Research and Therapy Optimization of Patients with Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz
ALEMANHA
Baden-Württemberg
FREIBURG
GAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz
ALEMANHA
Baden-Württemberg
FREIBURG
GAIN: Patient Registry of the German Network for the Research and Therapy Optimization of Patients with Multi-Organ Autoimmune Diseases
Universitätsklinikum Freiburg
ESID Online Datenbank
ALEMANHA
Mecklenburg-Vorpommern
GREIFSWALD
STER: FVII deficiency treatment international registry
Institut für Humangenetik der Universitätsmedizin Greifswald
Institut für Humangenetik
ALEMANHA
Niedersachsen
HANNOVER
GAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CRC Hannover
Hannover Unified Biobank (HUB)
AUSTRIA
STEIERMARK
GRAZ
Severe Immune Cytopenia Registry
Medizinische Universität Graz
Klinische Abteilung für pädiatrische Hämato-Onkologie
AUSTRIA
WIEN
WIEN
Ceprotin Treatment Registry
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie
ESTADOS UNIDOS
Georgia
ATLANTA
CHAMP: CDC Hemophilia A Mutation Project
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Division of Blood Disorders
FRANCA
ILE-DE-FRANCE
PARIS
ITALIA
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
REINO UNIDO
Cambridgeshire
CAMBRIDGE
Antithrombin related diseases Mutation Database
University of Cambridge
Department of Medicine
REINO UNIDO
Greater London
LONDON
UKAITPR: United Kingdom adult idiopathic thrombocytopenic purpura registry
Barts Health NHS trust - The Royal London Hospital-Pathology Pharmacy Building
Department of Haematology
REINO UNIDO
Greater London
LONDON
UKESR: United Kingdom Evans Syndrome Registry
Barts Health NHS trust - The Royal London Hospital-Pathology Pharmacy Building
Department of Haematology
REINO UNIDO
Greater Manchester
MANCHESTER
The UK Paediatric ITP Registry
Manchester University NHS Foundation Trust - Manchester Royal Infirmary
Immune Thrombocytopenic Purpura (ITP) Clinic
REINO UNIDO
Greater Manchester
MANCHESTER
UK Paediatric ITP (Immune Thrombocytopenic Purpura) Registry
Royal Manchester Children's Hospital
Medical Pathology
SUICA
Suisse Alémanique
BASEL
Intercontinental Cooperative ITP Study Group Registry
University Children's Hospital UKBB
Hematology/Oncology
SUICA
Suisse Alémanique
BASEL
Intercontinental Cooperative ITP Study Group Registry
Universitäts-Kinderspital beider Basel UKBB
Abteilung Onkologie / Haematologie
ALEMANHA
Bayern
MÜNCHEN
MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
ALEMANHA
Bayern
MÜNCHEN
German PAM/MFM registry: Patient registry for hereditary protein aggregate myopathies (PAM) / myofibrillar myopathies (MFM)
Friedrich-Baur-Institut
PAM/MFM-Patientenregister
ITALIA
LOMBARDIA
PAVIA
Italian registry for MYH9-related thrombocytopenia
Fondazione IRCCS Policlinico San Matteo
Clinica Medica III
REINO UNIDO
Tyne & Wear
NEWCASTLE UPON TYNE
The International GNE Myopathy Registry - Hereditary Inclusion Body Myopathy-Disease Monitoring (HIBM-DMP): A Combined Registry and Prospective Observational Natural History Study to Assess HIBM Disease (part of the TREAT-NMD network) - UK
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine
ALEMANHA
Hessen
GIEßEN
Mutation Database Retina International: Chediak Higashi Syndrome (LYST)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde
SUECIA
Region Skåne
LUND
LYSTbase: Mutation registry for Chediak-Higashi syndrome (previously known as CHS1base)
Lund University
Department of Experimental Medical Science
SUECIA
Region Skåne
LUND
WASbase: Mutation registry for Wiskott-Aldrich syndrome (WAS)
Lund University
Department of Experimental Medical Science
ALEMANHA
Hessen
GIEßEN
Mutation Database Retina International: Adaptin b3a Gene (AP3B1)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde
ALEMANHA
Hessen
GIEßEN
Mutation Database Retina International: ep-Gene (HPS1)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde
ALEMANHA
Hessen
GIEßEN
Mutation Database Retina International: Human light ear Gene (le, HPS4)
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde
ALEMANHA
Hessen
GIEßEN
Mutation Database Retina International: HPS3 Gene
Augenklinik des UKGM am Standort Gießen
Labor für molekulare Ophthalmologie - Klinik und Poliklinik für Augenheilkunde
SUECIA
Region Skåne
LUND
AP3B1base: Mutation registry for Hermansky-Pudlak syndrome 2
Lund University
Department of Experimental Medical Science
Redes de registos e biobancos
ESPANHA
Madrid
MADRID
SpainRDR: Spanish Rare Disease Registries Research Network (patient registries)
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
ALEMANHA
Niedersachsen
HANNOVER