CRMW - National Reference Centre for Von Willebrand Disease

Head :
Veyradier Agnès, Service d'Hématologie biologique, Hôpitaux Universitaires Paris Sud, site Antoine Béclère, Clamart

Last update : 07/08/2014 | Version : 1 | ID : 5348

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name National Reference Centre for Von Willebrand Disease
Sign or acronym CRMW
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL 1245379
General Aspects
Medical area Hematology
Rare diseases
Health determinants Genetic
Occupation
Social and psychosocial factors
Others (details) Von Willebrand disease, haemorrhagic disease
Keywords Haemostasis - von Willebrand factor
Scientific investigator(s) (Contact)
Name of the director Veyradier
Surname Agnès
Address Hématologie biologique, Hôpitaux Universitaires Paris Sud, site Antoine Béclère, 157 rue de la Porte de Trivaux, 92140 Clamart
Phone + 33 (0)1 45 37 43 05
Email agnes.veyradier@abc.aphp.fr
Unit Service d'Hématologie biologique, Hôpitaux Universitaires Paris Sud, site Antoine Béclère, Clamart
Organization Assistance Publique - Hôpitaux de
Collaborations
Funding
Funding status Mixed
Details Le CRMW a été labellisé en 2006 par le ministère de la santé dans le cadre du Plan National Maladies Rares 1 (PNMR1). Les postes obtenus sont financés par la DHOS (Direction de l'Hospitalisation et de l'Offre de Soins) ou DGS (Direction Générale de la Santé).
Governance of the database
Sponsor(s) or organisation(s) responsible Hôpitaux Universitaires Paris Sud
Organisation status Public
Sponsor(s) or organisation(s) responsible Centre Hospitalier Régional Universitaire de Lille
Organisation status Public
Additional contact
Main features
Type of database
Type of database Morbidity registers
Database recruitment is carried out by an intermediary A selection of health institutions and services
Database recruitment is carried out as part of an interventional study No
Additional information regarding sample selection. Subjects are selected based on phenotypic inclusion criteria (von Willebrand factor plasma levels). There is no random selection.
Database objective
Main objective Epidemiology of different types and sub-types of von Willebrand Disease in France
Inclusion criteria Patients with von Willebrand Disease monitored by hospitals in France
Population type
Age Newborns (birth to 28 days)
Infant (28 days to 2 years)
Early childhood (2 to 5 years)
Childhood (6 to 13 years)
Adolescence (13 to 18 years)
Adulthood (19 to 24 years)
Adulthood (25 to 44 years)
Adulthood (45 to 64 years)
Elderly (65 to 79 years)
Great age (80 years and more)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area FRANCE
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2007
Date of last collection (YYYY or MM/YYYY) 2013
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 1289 patients (1008 familles/families)
Data
Database activity Current data collection
Type of data collected Biological data
Biological data (detail) Von Willebrand factor phenotypic and genotypic data
Presence of a biobank Yes
Contents of biobank Whole blood
Plasma
DNA
Details of biobank content Plasma and DNA
Health parameters studied Health event/morbidity
Health event/mortality
Health care consumption and services
Quality of life/health perception
Care consumption (detail) Hospitalization
Medical/paramedical consultation
Medicines consumption
Procedures
Data collection method A physician and clinical research associate from the National Reference Centre for von Willebrand Disease (CRMW) continuously gather data as patients are included. Data are recorded electronically in an Excel file registered with the CNIL (Commission Nationale d'Informatiquess et des Libertés).
Participant monitoring Yes
Links to administrative sources No
Promotion and access
Promotion
Access
Terms of data access (charter for data provision, format of data, availability delay) Publications Only physicians and CRA from the CRMQ have access to data. This prerequisite is clearly stated in the CNIL agreement.
Access to aggregated data Access on specific project only
Access to individual data No access

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