ИСТИНА

Introduction:Large-scale epidemiology studies are a promising approach to establishing risk factors that lead to a more severe disease course in multiple sclerosis (MS), as well as defining treatment needs in various geographic regions. In 2017, an electronic registry of adult patients with MS who live in the Russian Federation was initiated. We present preliminary results of a four-year experience of maintaining a local e-Registry of patients with MS. Objectives:to identify key epidemiological indicators of the Russian population of MS patients: prevalence of MS clinical forms, features of disease course, initial diagnosis, time to confirmed diagnosis, use of disease-modifying therapies (DMTs), and switching between DMTs. Aims:the purpose of the study was to analyse a set of data derived from the local MS e-Registry in order to identify practical issues of diagnosis and treatment of MS in Russia. Methods:The Russian MS e-Registry is a prospective multicenter non-interventional study, with retrospective analysis of available medical records at the time of the patient's enrollment. A special individual registration form was created in order to collect demographic, clinical, laboratory, and neuroimaging data. Results:Between September 2017 and May 2022, data on 5201 patients aged from 18 to 78 were collected. Mean age of MS patients was 37.7 (31.3; 45.5) years; 66.2% (3443) were female. Mean age at symptom onset was 29 (23; 36) years. Relapsing-remitting MS (RRMS) was observed in 83% (4317) of all registered cases, secondary progressive MS (SPMS) — in 12% (614) of cases (active SPMS – in 4.8% (250)), primary progressive MS – in 5% (270) of all patients. Mean time to diagnosis was 12 (1; 41) months. The most prominent diagnostic delay (40 (7; 97) months) among all disease forms was observed in patients with initial diagnosis of SPMS. In 38.1% of all cases, initial diagnosis was not a neurological condition, since patients were mostly addressed to general practitioners (GPs) and other clinicians (not specializing in neurology). Mean time between diagnosis of MS and DMTs initiation was 4 (1; 25) months. Conclusions:Our findings suggest that diagnosis and treatment of MS in Russia has several major issues, such as delayed diagnosis and late initiation of DMTs that contribute to earlier transition of RRMS to a secondary progressive course. Raising GPs awareness of MS manifestations may result in a decrease in the average diagnostic delay in MS in Russia.