By Arthur Barbalho – Ascom/LAIS
Focused on knowing the real profile of patients with Amyotrophic Lateral Sclerosis in Brazil, the platform for self-reporting and ALS Observatory in Brazil was launched this Tuesday (12). The initiative is promoted by the Laboratory for Technological Innovation in Health at the Federal University of Rio Grande do Norte (LAIS/UFRN), through the revELA project. The ceremony, held virtually, was attended by representatives of patient organizations and public health authorities who work with rare diseases.
The event was opened by Professor Ricardo Valentim, LAIS executive director. He highlighted the pioneering spirit of RN in monitoring the disease, as well as the potential of the platform. “RN is the first state in Brazil to make the notification of patients with ALS compulsory. Having the self-report platform in operation is a singular movement for the control and monitoring of the disease in the national territory,” he said.
For the president of the Regional Association of Amyotrophic Lateral Sclerosis of Rio Grande do Sul (Arela/RS), who on the occasion represented the other regional associations in the country, the technology will make it possible to map the real situation of ALS in the country, enabling standardized initiatives throughout the territory. “The national registry unifies, detects and shows all patients. To do something, we need to know who we are, where we are in this huge country. In this trajectory, we need this mapping to be able to find all these people with ALS and strengthen this whole support network. It makes no sense to have all the guidelines in Rio Grande do Sul and not share them with other places that have the same needs. ALS ‘does not discriminate’, but it is a disease that can affect anyone. Thus, knowledge about the disease is fundamental”, he highlighted.
The following authorities were also at the opening table: Raphael Nepomuceno Galvão Santos, head of the Care Management Division of the Onofre Lopes University Hospital (HUOL), Vânia Tie Koga Ferreira, substitute general coordinator of People with Rare Diseases of the Ministry of Women, Family and Human Rights; Felipe Silva Bellucci, general coordinator of Enabling Technologies of the Ministry of Science, Technology and Innovations; Thâmmara Tito, representative of the Department of Management and Incorporation of Technologies and Innovations in Health of the Ministry of Health; and Lyane Ramalho, assistant secretary of Public Health of Rio Grande do Norte.
The self-reporting platform
The presentation of the platform was made by Professor Danilo Nagem, one of the coordinators of the revELA project, and by LAIS researcher Ingridy Barbalho. They detailed how the platform will work, which will have the possibility of registration done both by the patient and the doctor who accompanies him.
According to Nagem, the service will offer a situation room that will provide an overview of the impact of ALS in the country. “In addition to self-reporting, the revELA project has a series of initiatives for the treatment and care of the ALS patient. I am very happy that we can make the presentation of this self-report. Through its situation room, we will be able to show a little bit of the scenario of the disease in Brazil”, he said.
Also according to the presentation, the expectation is that the service will allow an analysis of the geographic distribution of ALS as a public health problem. “With the platform, it will be possible to analyze this geographical distribution and write down the main demographic factors, such as ethnicity, age, gender, and school history of individuals diagnosed with the disease,” explained Ingridy.
She also pointed out that the platform will allow doctors and specialists to follow the evolution of patients. “In a next moment, it will be possible to have this periodic follow-up of patients, with a focus on monitoring the progression of the disease. This is important to understand their behavior. Furthermore, with the observatory in operation, it fulfills the objective of assisting in the creation of public policies for patients with Amyotrophic Lateral Sclerosis,” she concluded.