Dados do Trabalho

Título

The protocol and the implementation steps of the Brazilian Amyotrophic Lateral Sclerosis registry.

Resumo

Introduction: ALS is a rare disease. Recent studies have reported the incidence of ALS between 0.6 and 3.8 per 100,000 person-years, with possible geographic variation. In Brazil, its incidence and prevalence and the distribution of cases in the national territory are unknown. In recent years, the public health importance of rare diseases has been recognized. The use of a population-based registry, allowing the collection of information on all individuals diagnosed with ALS, allows a reliable estimate of the incidence and prevalence of the disease, in addition to other data that can be analyzed. Objectives: Our mission is to describe the study protocol and the steps to implement the ALS registry in Brazil. Methods: The Brazilian ALS registry began in 2022, with a retrospective and prospective collection of cases, as a multicenter observational study of a population-based cohort. A web platform was developed by the Laboratory of Technological Innovation in Health (LAIS) to collect data on new and monitored cases of ALS in different regions of Brazil. Demographic variables such as age at onset, ethnicity, sex, and family history of ALS and FTD will be collected. This data can be added by the physician (neurologist or neurophysiologist) or by the patient (self-registry). Six months later, the physician will be invited to update the patients' clinical situation. All participating centers have authorization from the corresponding research ethics committee. Results: The ALS registry was successfully implemented. Different centers throughout the Brazilian territory have already contributed to the registration platform and data from ALS patients have already been collected. Os dados serão analisados no final de 2022. Conclusion: We reached consensus on a central dataset and data sharing processes established with various partners to address the need for high quality information on the epidemiology of ALS in Brazil. In this way, we can plan health planning interventions, support decision-making processes regarding the diagnosis and evolution of the disease.

Palavras Chave

Amyotrophic lateral sclerosis, Registry, self-registry