Introducing the Observatoire Français de la Sclérose en Plaques (OFSEP), a registry whose objective it is to maintain and expand the cohort of patients with MS in France, to enrich existing clinical data with imaging and medical-economic data and with biological samples, and to allow access to the data and biological samples to researchers worldwide.
- The French Registry of Multiple Sclerosis (OFSEP)
- To describe MS population included in the cohort
- To conduct research on priority projects (nestedc ohorts) on specific populations: Clinically Isolated Syndrome (CIS), Radiologically Isolated Syndrome (RIS), Primary Progressive MS course (PPMS) and Devic’s disease.
- To set a minimal amount of data for the clinical, imaging, therapeutic, medico-economic data and biological samples = to harmonize data collection
Amount of Data Available
Data provided twice a year by an automatic and anonymised extraction:
- 47,438 patients files
- + 4,845 files in 2014
- + 3 new centres in 2015
Estimated number of french MS patients : 80,000 to 120,000
Scientific Added Value
- A huge cohort describing MS patients in >30 hospitals (university or not) in the whole french territory
- Data are available for the scientific community: 19 projects submitted by researchers and assessed by OFSEP in 2014- 2015: 15 accepted.
- Allows regulatory authorities to give recommendations to improve healthcare
- Dissemination of results
Special interest for:
- Special populations
- New drugs evaluation (Risk management plans, PASS, …)
- Natural history (some patients followed-up >30 years)
- Added value of imaging, biology and medico-economics