Relevance. To ensure the implementation of the order of the President of Russia V. V. Putin of 08.07.2020 No. Pr-1081 on the organization of providing medicines to children suffering from rare (orphan) diseases at the expense of the federal budget, the Circle of Good Foundation was established. The fund's work will provide thousands of children with the necessary treatment, in particular, to purchase expensive drugs that are not yet registered in Russia. Funds in the "Circle of Good" will be received at the expense of increased personal income tax for citizens whose income exceeds 5 million rubles a year. In the official registers that exist in Russia, there is no disease of spinal muscular atrophy (hereinafter referred to as SMA), which means that information about patients is not entered in the register, and information about the patient remains only at the level of a specialist doctor who observes this child as a patient with a chronic disease who is on dispensary observation. Reliable data on the number of patients diagnosed with SMA is not available in any region using official statistical forms or registers. The lack of reliable data on patients, their needs for specific medications (dosages, anthropometric indicators), the dynamics of the condition (the presence of scoliosis, dependence on ventilators, palliative status) do not allow us to calculate the need at the level of both the subject and the federation. This situation indicates the need to create a single register of patients with different levels of access (for doctors, chief specialists and heads of health authorities in the region). Goal. Creation of a prototype of a clinical dynamic register of patients with a genetically confirmed diagnosis of spinal muscular atrophy (SMA), which allows to enter clinical data for each SMA patient at the regional level, with subsequent changes depending on the clinical effectiveness of pathogenetic therapy and the patient's condition. Materials and methods. A prospective multicenter non-interventional observational study on the collection and analysis of data on the routine practice of diagnosis and treatment of patients with spinal muscular atrophy, including genetic testing, analysis of the patient's motor functions, the need for respiratory and nutritional support, and the availability of pathogenetic therapy in 48 regions of the Russian Federation. Results. A prototype of the SMA patient register was created, which included 23 variables, the patient's clinical and social profile, and the availability of pathogenetic therapy. An analysis of 7 subjects was conducted, which showed that in type I patients in 94%, in 95% in type II and 95% in type III patients with SMA, in type I SMA, 29% of patients had 1 copy of the SMN2 gene, two copies had 24% of patients, 3 copies-24%, in 24% the study was not conducted, the number of copies more than four was not presented in any patient. In type I, 71% of patients do not have such a possibility, in the second type (29%) of patients cannot sit independently or sit with support – 39%, while sitting independently and without support – 32%. In type I SMA, 71% of patients do not hold their heads, in type II – 32% and in type III – 10% of patients. In type I, 65% have scoliosis of varying severity, in type II-34% and in type III, scoliosis is observed in 71% of patients. In type I SMA, 59% of patients need respiratory support of any type, of which 18% need non-invasive ventilation and 41% need invasive support through a tracheostomy, 41% of patients do not need respiratory support. In type II SMA, 41% do not need it. In type III, no patient needs respiratory support. 71% of type I patients can consume oral sipings, the nasogastric route of feeding is used in 12% and in 18% there is a gastrostomy. In type II SMA, only 2% of patients need probe nutrition, and 47% need oral medications or sipings. In type III SMA, all patients can eat independently and need oral medications to maintain normal muscle mass.