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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

Financiado por um membro do IRDiRCERN [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

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

Financiado por um membro do IRDiRCInternational 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

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

ALEMANHA

Baden-Württemberg
FREIBURG

Financiado por um membro do IRDiRCGAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz

ALEMANHA

Mecklenburg-Vorpommern
GREIFSWALD

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

ALEMANHA

Niedersachsen
HANNOVER

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

CANADA

Québec
MONTRÉAL

World Bleeding Disorders Registry
World Federation of Hemophilia

ESTADOS UNIDOS

Georgia
ATLANTA

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

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

PAISES BAIXOS

Utrecht
BAARN

PedNet Haemophilia Registry
PedNet Haemophilia Research Foundation

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

ITALIA

LOMBARDIA
PAVIA

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

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

    BMFS: Network for Congenital Bone Marrow Failure Syndromes (patient registry)
  • Medizinische Hochschule Hannover
  • Koordinationsstelle des Netzwerkes für angeborene Störungen der Blutbildung