Title: National registry for ALS: The Brazilian implementation case study

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a nervous system disease considered rare, degenerative, incapacitating and that is irreversible thus far. The worldwide incidence of ALS ranges from 0.6 to 3.8 cases per 100,000 people per year, whereas the prevalence is approximately 4.1 to 8.4 per 100,000. Researchers have seen the need and importance of implementing a clinical database that can provide support for the advancement of research in ALS. Population studies have revealed ALS frequency in different continents and ethnicities. The significance of population registers is being increasingly observed as an essential complement to improve clinical assessment techniques [1, 20, 21]. The REVELA project is a LAIS initiative with the government and national associations and communities. The implementation of the national ALS registry is one of the project's objectives. The System was fully developed based on the new data protection standards of the Brazilian government. The registry is designed to allow physicians and patients to enter data without duplication. the project is being tested at five university hospitals. It will be open for patients to enter data in a few months. With this study it will be possible to know the incidence and prevalence of patients with ALS in Brazil. In a second phase of this work, we will incorporate the electronic medical record specific for ALS to the register.