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. 2023 Aug 25:11:1209633.
doi: 10.3389/fpubh.2023.1209633. eCollection 2023.

Digital health solution for monitoring and surveillance of Amyotrophic Lateral Sclerosis in Brazil

Ingridy M P Barbalho #  1 , Aleika L A Fonseca #  1 , Felipe Fernandes  1 , Jorge Henriques  2 , Paulo Gil  2 , Danilo Nagem  1 , Raquel Lindquist  3 , Thaisa Lima  4 , João Paulo Queiroz Dos Santos  5 , Jailton Paiva  1 , Antonio H F Morais  1 , Mário E T Dourado Júnior  6 , Ricardo A M Valentim  1
Affiliations

Digital health solution for monitoring and surveillance of Amyotrophic Lateral Sclerosis in Brazil

Ingridy M P Barbalho et al. Front Public Health. .

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a complex and rare neurodegenerative disease given its heterogeneity. Despite being known for many years, few countries have accurate information about the characteristics of people diagnosed with ALS, such as data regarding diagnosis and clinical features of the disease. In Brazil, the lack of information about ALS limits data for the research progress and public policy development that benefits people affected by this health condition. In this context, this article aims to show a digital health solution development and application for research, intervention, and strengthening of the response to ALS in the Brazilian Health System. The proposed solution is composed of two platforms: the Brazilian National ALS Registry, responsible for the data collection in a structured way from ALS patients all over Brazil; and the Brazilian National ALS Observatory, responsible for processing the data collected in the National Registry and for providing a monitoring room with indicators on people diagnosed with ALS in Brazil. The development of this solution was supported by the Brazilian Ministry of Health (MoH) and was carried out by a multidisciplinary team with expertise in ALS. This solution represents a tool with great potential for strengthening public policies and stands out for being the only public database on the disease, besides containing innovations that allow data collection by health professionals and/or patients. By using both platforms, it is believed that it will be possible to understand the demographic and epidemiological data of ALS in Brazil, since the data will be able to be analyzed by care teams and also by public health managers, both in the individual and collective monitoring of people living with ALS in Brazil.

Keywords: epidemiological monitoring; health indicators; health information system; public health; public policy; rare diseases.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
Digital solution development process.
Figure 2
Figure 2
National Registry screen after physician user login. All data shown in this image are fictitious.
Figure 3
Figure 3
Registration screen of a new patient in the National Registry.
Figure 4
Figure 4
Follow up form screen for the ALS patients' monitoring.
Figure 5
Figure 5
Self-report registration screen performed by the patient in the registry's platform.
Figure 6
Figure 6
Patient data validation flow in the self-report.
Figure 7
Figure 7
Home screen with general data collected through the National Registry.
Figure 8
Figure 8
ALS indicators in Brazil.
Figure 9
Figure 9
Indicators of ALS patients in the state of Rio Grande do Norte.
Figure 10
Figure 10
National Registry Architecture and ALS Observatory.
Figure 11
Figure 11
Timeline with the daily numbers of registrations and self-reports made in the National Registry.
See this image and copyright information in PMC

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