Informations générales (source: ClinicalTrials.gov)
The French Multiple Sclerosis Registry (OFSEP)
Observational
Hospices Civils de Lyon (Voir sur ClinicalTrials)
janvier 2011
décembre 2019
19 octobre 2024
OFSEP is an observational cohort of Multiple Sclerosis (MS) and related disorders set up
in France. It aims to provide a major epidemiological tool on MS for the scientific
community in France and abroad. This tool must help to answer a large number of questions
concerning the causes and mechanisms of MS, the prognostic factors of disease
progression, the effectiveness and safety of therapeutic drugs, the impact of the disease
on patients and society, etc.
In December 2015, it has already included more than 54.000 patients. To achieve this
goal, OFSEP's objectives are
- To maintain and develop the French cohort of patients suffering from MS or related
diseases and syndromes. This means collecting standardized socio-demographic and
clinical data as part of the routine medical follow-up of patients already in the
cohort and recruitment of new patients.
- To supplement the existing clinical data with standardized and quality biological
samples and MRI scans.
- To improve the previous data with medical/administrative data from the health
insurance fund databases in particular, in order to get more information on
comorbidity, treatment protocols and the medico-economic aspects of this disease.
- To use OFSEP infrastructures to facilitate the implementation of specific studies
requiring the collection of additional data or specific patient monitoring
processes.
- To ensure the availability of these data and samples to researchers, health care
authorities and industrial players to enable analysis and thus provide answers to
research questions or public health issues. This availability is only possible after
scientific and regulatory evaluation of the request.
- To provide regular descriptions of the patient population in the cohort to offer
statistics, targets and up-to-date information on this disease and thus enable a
better approach to the personal, professional and social impacts of the illness, the
effects of basic treatments and the requirements related to the follow-up of this
disease in France.
- To conduct specific studies on the entire population of patients in the cohort
(parent cohort) or on patient sub-groups with specific characteristics (nested
cohorts). Four nested cohorts have been defined: patients with radiologically
isolated syndromes, patients with clinically isolated syndromes, patients with
primary progressive courses of the disease and patients with neuromyelitis optica
(Devic's syndrome) spectrum disorders.
Etablissements
| Les établissements d'Île-de-France ayant mis à jour leurs données Origine et niveau de fiabilité des données | |||||
|---|---|---|---|---|---|
| HOPITAL NOVO | POTTIER | 04/07/2024 11:04:55 | Contacter | ||
| Les établissements hors Île-de-France dont les données sont issues de ClinicalTrials.gov Origine et niveau de fiabilité des données | |||||
| Hospices Civils de Lyon / Hopital Neurologique Pierre Wertheimer - 69500 - Bron - France | Contact (sur clinicalTrials) | ||||
Critères
Tous
Inclusion Criteria:
- RIS
- CIS
- MS according to McDonald 2010 criteria
- NMOSD and others as per NOMADMUS criteria
- No age limt
- All clinical courses
- Domiciliated in France
- Signed OFSEP informed consent
- RIS
- CIS
- MS according to McDonald 2010 criteria
- NMOSD and others as per NOMADMUS criteria
- No age limt
- All clinical courses
- Domiciliated in France
- Signed OFSEP informed consent
NONE
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