CRB-REFGENSEP - Biological Resources Centre (BRC) of The French Multiple Sclerosis Genetics Group
Head :
Fontaine Bertrand, CRICM INSERM U 975
Rebeix Isabelle, INSERM UMR S 975. CRICM
Rebeix Isabelle, INSERM UMR S 975. CRICM
Last update : 07/08/2015 | Version : 1 | ID : 5153
| General | |
| Identification | |
| Detailed name | Biological Resources Centre (BRC) of The French Multiple Sclerosis Genetics Group |
| Sign or acronym | CRB-REFGENSEP |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL no. 00239 (05/02/2001), no. DC-2008-539, no. AC-2008-548. |
| General Aspects | |
| Medical area |
Neurology |
| Health determinants |
Genetic |
| Keywords | genetic and clinical criteria, patients |
| Scientific investigator(s) (Contact) | |
| Name of the director | Fontaine |
| Surname | Bertrand |
| Address | 47 boulevard de l’hôpital 75013 Paris |
| Phone | + 33 (0)1 57 27 40 53 |
| bertrand.fontaine@upmc.fr | |
| Unit | CRICM INSERM U 975 |
| Organization | INSERM |
| Name of the director | Rebeix |
| Surname | Isabelle |
| Address | CRICM UMR S 975, Hôpital Pitié-Salpêtrière. 47 bd de l'hôpital 75013 PARIS |
| Phone | + 33 (0)1 57 27 44 08 |
| isabelle.rebeix@upmc.fr | |
| Unit | INSERM UMR S 975. CRICM |
| Organization | INSERM |
| Collaborations | |
| Funding | |
| Funding status |
Mixed |
| Details | INSERM, GIS-IBISA, ARSEP, AFM |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | INSERM |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Study databases |
| Study databases (details) |
Longitudinal study (except cohorts) |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Campaign to obtain samples from 23 French hospital centres. |
| Database objective | |
| Main objective | To make a collection of DNA and cells from patients with multiple sclerosis and their relatives that can be accessed by the scientific community (any team on request). |
| Inclusion criteria | Adult patients with multiple sclerosis and their relatives. |
| Population type | |
| Age |
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) |
| 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) | 1996 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 6,000 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Biological data Administrative data |
| Clinical data (detail) |
Medical registration |
| Biological data (detail) | HLA (human leukocyte antigen) genotype and SNP (single-nucleotide polymorphism) genotype. |
| Administrative data (detail) | Civil status, address when sample was taken. |
| Presence of a biobank |
Yes |
| Contents of biobank |
Blood cells isolated Cell lines DNA |
| Details of biobank content | Biological samples are available to any research team on request. This request will be assessed by the CRB-REFGENSP scientific committee |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | The following is collected during the clinical examination in a REFGENSEP network collection centre: age of disease onset, disease type and disability (EDSS/Expanded Disability Status Scale). Genetic annotations are collected during collaborations with research teams. |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Disease progression, in terms of disability, is monitored during consultations. |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Send written request to isabelle.rebeix@upmc.fr. |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
