Observatório nacional da Esclerose Lateral Amiotrófica: uma sala de situação com dados clínicos e epidemiológicos da doença

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative disease characterized by progressive muscle paralysis that reflects the degeneration of motor neurons. Although there is still no determining factor for the cause of the disease, projections show that the number of ALS cases in the world will increase from 222,801 in 2015 to 376,674 in 2040, representing an increase of 69\%. Despite the growing number of ALS cases, Brazil still has few studies on this disease and no attempt has been made to assemble a comprehensive database to assess epidemiological aspects of it. To meet this need, the ALS Incidence and Prevalence Registry was recently started in Brazil, or just the National Registry, which collects various data on patients, such as epidemiological, demographic, clinical and treatment data. With the collected data, the need to analyze them arises. This is where data science comes in. Studies already show how data-driven decisions open up new possibilities to increase the quality of health care. Data science will be used to guide the development of an ALS situation room, through dashboards available on a Web page composed of graphics that will be used to better understand the profile of ALS patients in the country and to assist in making decisions. The proposed graphs will only be some suggestions for analyzes that were created according to studies of which information is most relevant for the evaluation of the disease.