Observatoire Français de la Sclérose en Plaques (OFSEP): A unique multimodal nationwide MS registry in France

Abstract

The care of multiple sclerosis (MS) in France is based on two complementary interlinked networks: MS expert centers in university hospitals and regional networks of neurologists. The routine use of European database for multiple sclerosis (EDMUS) in all those centers has paved the way for the constitution of a national registry, designated as Observatoire Français de la Sclérose En Plaques (OFSEP). It promotes a prospective, standardized, high-quality, and multimodal collection of data. On June 2018, there were 68.097 files, with 71.1% females, representing 761,185 person-years. This huge database is open to the scientific community and might contribute exploring unresolved issues and unmet needs in MS.

Epidemiology and phenotypes of multiple sclerosis in the Middle East North Africa (MENA) region

“…Patients with PPMS constituted 3.2% of the total cohort, reflecting a lower proportion compared with modern Western populations: 10.7% in France, 12.9% in the UK, 12.4% in British Columbia and 6% in Italy, but similar to Japan (3%). 29–31 However, the possibility of under-diagnosis of PPMS in our registry could not be ruled out, as the latter’s diagnosis is usually more difficult in clinical practice. The NMOSD/MS ratio in our cohort was close to what has been reported in the West.…”

“…Compared with recent epidemiological studies from the West, our patients had a younger mean age at onset: 27.8 years vs. 30.5 years in Italy, 32.5 years in France and 30.0 years in the UK. 29–31 A total of 10.6% had onset of symptoms below the age of 18 as compared with 5.5% in the French cohort. The proportion of females, however, was similar: 72.3% vs. 71.1% and 67% in the French and Italian registries, respectively.…”

Clinical Features and Risk of Relapse in Children and Adults with Myelin Oligodendrocyte Glycoprotein Antibody–Associated Disease

“…All information from identified cases of the two cohorts was collected in a standardized evaluation form and registered in the French nationwide database for neuromyelitis optica and associated neurologic disorders (NOMADMUS), a subset of the Observatoire Français de la Sclérose en Plaques (OFSEP), 18 the French multiple sclerosis (MS) registry. Demographic (gender, age at disease onset) and clinical data such as date of relapses, clinical phenotype at onset, disability measured by Expanded Disability Status Scale (EDSS), and visual acuity (VA) within 1 month from onset were collected.…”

Frequency of myelin oligodendrocyte glycoprotein antibody in multiple sclerosis

“…8 Clinical information was provided in specific case report forms by a neurologist with expertise in neuroinflammatory disorders and entered in the Eugene Devic Foundation against Multiple Sclerosis (EDMUS) database. 9 Demographic data (sex and Caucasian ethnicity) and age at the onset of disease and disease duration at sampling were collected. MS disease subtype (clinically isolated syndrome, relapsing-remitting, secondary or primary progressive MS) was also reported.…”

“…Standard protocol approvals, registrations, and patient consents All participants included in the present study belong to the national French registry designated as Observatoire Français de la Sclérose En Plaques 9 and signed informed consent to have their medical data collected in routine practice used after anonymization and aggregation for research purposes. MOG-Ab were performed as part of the clinical routine evaluation; thus, no other specific consent was required.…”