x

Cerca un registro/una biobanca

* (*) campo obbligatorio

78 Risultato/i

Ordinato per

Finanziato da un ente associato a IRDiRC =

Registri and biobanche

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

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Haemoglobinopathies - database
Erasme Hospital - ULB
Centre de génétique humaine - ULB

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Haemoglobinopathies - database
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Central Registry of Rare Diseases (CRRD)
Sciensano
Health Services Research - Rare Diseases

FINLANDIA

Finland
HELSINKI

Finnish Hematology Register and Biobank - FHRB
HUCH - Helsinki University Central Hospital
Hematology Clinic

FRANCIA

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)

GRECIA

GREECE
ATHENS

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

PAESI BASSI

Zuid-Holland
LEIDEN

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

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

EHR: European Haemoglobinopathy Registry
North West London Hospitals NHS - Central Middlesex Hospital
Middlesex Sickle Cell & Thalassaemia Centre

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

NHR: National Haemoglobinopathy Registry
North West London Hospitals NHS - Central Middlesex Hospital
Brent Sickle Cell & Thalassaemia Centre

SPAGNA

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

SPAGNA

Madrid
MADRID

REPHem-SEHOP: Paediatric Haemoglobinopathies Spanish Registry
Hospital General Universitario Gregorio Marañón
Registro Español Pediátrico de Hemoglobinopatías

GERMANIA

Baden-Württemberg
HEIDELBERG

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

GERMANIA

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

GERMANIA

Nordrhein-Westfalen
DÜSSELDORF

German central registry for Sickle cell disease
Universitätsklinikum Düsseldorf
Klinik für Kinder-Onkologie, -Hämatologie und klinische Immunologie

PAESI BASSI

Gelderland
NIJMEGEN

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

STATI UNITI

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

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian sickle cell anemia registry
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

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

FRANCIA

ILE-DE-FRANCE
CRÉTEIL

French sickle cell anemia registry
CHU Henri Mondor
Unité des Maladies Génétiques du Globule Rouge

FRANCIA

ILE-DE-FRANCE
CRÉTEIL

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

FRANCIA

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

FRANCIA

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

French certified registry of patients affected by thalassemia
CHU de Marseille - Hôpital de la Timone
Laboratoire de génétique moléculaire

GERMANIA

Baden-Württemberg
FREIBURG

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

GERMANIA

Baden-Württemberg
ULM

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

GERMANIA

Niedersachsen
HANNOVER

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

ITALIA

CAMPANIA
NAPOLI

Registro internazionale dell'anemia diseritropoietica congenita, tipo 2
Biotecnologie Avanzate Srl
Area Funzionale di Genetica Medica

ITALIA

CAMPANIA
NAPOLI

RIAF: Registro Italiano Anemia di Fanconi
P.S.I. "Elena d'Aosta"
U.O.C. Servizio di Genetica

ITALIA

LIGURIA
GENOVA

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

ITALIA

LOMBARDIA
PAVIA

RIMM: Registro Italiano delle Mielofibrosi con Metaplasia Mieloide
Fondazione IRCCS Policlinico San Matteo
Laboratorio di Epidemiologia Clinica

ITALIA

SICILIA
PALERMO

Registro Siciliano delle Talassemie ed Emoglobinopatie (Re.S.T.E.)
Ossevatorio Epidemiologico dell Assessorato regionale

ITALIA

VENETO
PADOVA

Registro per le sindromi di Wolfram, Alström , Bardet-Biedl e altre sindromi rare - afferisce al network EURO-WABB
Azienda Ospedaliera di Padova
Laboratorio Endocrino Metabolico - Clinica Medica 3

ITALIA

VENETO
VERONA

Registro Italiano per i pazienti affetti da Sindrome di Shwachman Diamond
Azienda Ospedaliera Universitaria Integrata di Verona - Ospedale Borgo Trento
Centro Fibrosi Cistica

POLONIA

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

POLONIA

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

PORTOGALLO

NORTE
PORTO

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

REGNO UNITO; GRAN BRETAGNA

North Yorkshire
YORK

UK & Ireland Fanconi Anaemia Registry
The University of York
Epidemiology and Genetics Unit

SPAGNA

Castilla - León
SALAMANCA

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

SPAGNA

Cataluña
BELLATERRA

DNA repair biobank
Universitat Autònoma de Barcelona
Grupo de inestabilidad genómica y reparación del DNA

SPAGNA

Madrid
MADRID

Fanconi anemia patient registry database
CIEMAT - Centro de Investigaciones Energéticas Medioambientales y Tecnológicas
Terapias innovadoras en el sistema hematopoyético

STATI UNITI

Illinois
CHICAGO

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

STATI UNITI

New York
NEW YORK

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

SVEZIA

Skane
LUND

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

SVEZIA

Skane
LUND

SBDSbase: Mutation registry for Shwachman-Diamond syndrome
Lund University
Department of Experimental Medical Science

AUSTRIA

WIEN
WIEN

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

FRANCIA

AUVERGNE-RHONE-ALPES
ADDRESS: NOT PROVIDED - FR

The global aHUS Registry
Institution: Information not provided - FR

FRANCIA

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

FRANCIA

ILE-DE-FRANCE
PARIS

French Registry of Atypical Hemolytic Uremic Syndrome (aHUS) in Children
CHU Paris IdF Ouest - HEGP Hôpital Européen Georges Pompidou
Laboratoire d'Immunologie biologique

GERMANIA

Baden-Württemberg
HEIDELBERG

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

GERMANIA

Baden-Württemberg
HEIDELBERG

Finanziato da un ente associato a IRDiRCEIMD: European registry and network for intoxication type metabolic diseases
Zentrum für Kinder- und Jugendmedizin - Angelika-Lautenschläger-Klinik
Klinik für Kinderheilkunde I - Sektion für Neuropädiatrie und Stoffwechselmedizin

IRLANDA

County Dublin
DUBLIN

Finanziato da un ente associato a IRDiRCIrish Registry for homocystinurias and methylation defects - contributes to E-HOD
Children's University Hospital
National Centre for Inherited Metabolic Disorders

ITALIA

LOMBARDIA
RANICA

Finanziato da un ente associato a IRDiRCRegistro Internazionale delle forme ricorrenti e familiari di sindrome emolitico uremica/porpora trombotica trombocitopenica
Istituto di Ricerche Farmacologiche Mario Negri
Centro di Ricerche Cliniche per le Malattie Rare

ITALIA

PUGLIA
VALENZANO

registro della talassemia multiregionale italiana
Fondazione per la Ricerca Farmacologica Gianni Benzi
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus

PAESI BASSI

Noord-Holland
AMSTERDAM

REGNO UNITO; GRAN BRETAGNA

Cheshire
KNUTSFORD

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

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

REGNO UNITO; GRAN BRETAGNA

West Midlands
BIRMINGHAM

Finanziato da un ente associato a IRDiRCEIMD: European registry and network for intoxication type metabolic diseases
Birmingham Children's Hospital NHS Foundation Trust
Department of Clinical Inherited Metabolic Disorders

SPAGNA

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

SPAGNA

País Vasco
DERIO

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

SPAGNA

País Vasco
DERIO

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

SVEZIA

Skane
LUND

TCN2base: Mutation registry for Transcobalamin II deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Skane
LUND

CD59base: Mutation registry for CD59 deficiency
Lund University
Department of Experimental Medical Science

SVIZZERA

Suisse Alémanique
BERN

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

TURCHIA

TURKEY
ANKARA

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

GERMANIA

Nordrhein-Westfalen
MÜNSTER

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

GERMANIA

Nordrhein-Westfalen
MÜNSTER

ITALIA

LAZIO
ROMA

Registro Italiano della Sindrome Emolitico-Uremica
ISS - Istituto Superiore di Sanità
Centro Nazionale Malattie Rare

SPAGNA

Cataluña
BARCELONA

Finanziato da un ente associato a IRDiRCEUROMAC: Registry of patients affected by McArdle Disease
Vall d'Hebron Institut de Recerca VHIR
Grupo de investigación en patología neuromuscular y mitocondrial

SVEZIA

Skane
LUND

C3base: Mutation registry for C3 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Skane
LUND

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

Network di registri and biobanche

GERMANIA

Niedersachsen
HANNOVER

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

    West Midlands
    BIRMINGHAM

    GERMANIA

    Baden-Württemberg
    HEIDELBERG

    iNTD Network - International Working Group on Neurotransmitter Related Disorders
  • Dietmar-Hopp-Stoffwechselzentrum
  • Klinik für Kinderheilkunde I - Stoffwechsellabor
  • PAESI BASSI

    Noord-Holland
    AMSTERDAM

    Finanziato da un ente associato a IRDiRCE-HOD - European network and registry for homocystinurias and methylation defects
  • Amsterdam UMC, locatie VUmc
  • Afdeling Interne Geneeskunde