After the foundation for the support of children with severe life-threatening and chronic diseases, including rare (orphan) diseases of the "Circle of Good" was established in early 2021 by Presidential Decree No. 16 dated 05.01.2021, every patient with certain orphan diseases, including spinal muscular atrophy (SMA), had a real opportunity to learn expensive pathogenetic therapy and rehabilitation tools. The problems of collecting and analyzing information on the prevalence and incidence of spinal muscular atrophy affect the availability of pathogenetic therapy for patients and procurement planning. Forecasting purchases is impossible without reliable information about the number of patients in each subject. To solve the issue, it is necessary to create a Federal register of patients with SMA, but at the first stage it is necessary to conduct a non-interventional observational study. The purpose of this study is to create a prototype of a clinical dynamic register of patients with a genetically confirmed diagnosis of SMA, which allows to enter clinical data on each SMA patient at the regional level, with subsequent changes depending on the clinical effectiveness of pathogenetic therapy and the patient's condition. The study design is a prospective multicenter non-interventional observational study. The study included data on 763 SMA patients living in 41 subjects of the Russian Federation, the population of which is 113,139,023 people (77% of the population of the Russian Federation). The study included all patients from 0 years of age, including adults diagnosed with type I-IV SMA. Newly identified patients with a genetically confirmed diagnosis of SMA were analyzed separately. In a number of analyzed cases (described in the text), type IV SMA was excluded, since according to clinical recommendations, this type of disease does not require pathogenetic or palliative treatment, and patients develop as normal individuals in the general population. Results: Сurrently, 4 types of drugs are available in the Russian Federation that have a pathogenetic mechanism of action, namely, they affect various loci of the affected SMN1 and SMN2 genes. Pathogenetic therapy is performed in 262 patients, the frequency of pathogenetic therapy is 38.0%; 95% CI 34.5-41.7. Conclusions: Pathogenetic therapy depends on the type of SMA (p