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