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. 2021 Jul 6;21(1):269.
doi: 10.1186/s12883-021-02298-2.

National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases

Ingridy Barbalho  1 , Ricardo Valentim  2 , Mário Dourado Júnior  3 , Daniele Barros  4 , Hércules Pedrosa Júnior  5 , Felipe Fernandes  5 , César Teixeira  6 , Thaísa Lima  7 , Jailton Paiva  5   8 , Danilo Nagem  5
Affiliations

National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases

Ingridy Barbalho et al. BMC Neurol. .

Abstract

Background: This article comprises a systematic review of the literature that aims at researching and analyzing the frequently applied guidelines for structuring national databases of epidemiological surveillance for motor neuron diseases, especially Amyotrophic Lateral Sclerosis (ALS).

Methods: We searched for articles published from January 2015 to September 2019 on online databases as PubMed - U.S. National Institutes of Health's National Library of Medicine, Scopus, Science Direct, and Springer. Subsequently, we analyzed studies that considered risk factors, demographic data, and other strategic data for directing techno-scientific research, calibrating public health policies, and supporting decision-making by managers through a systemic panorama of ALS.

Results: 2850 studies were identified. 2400 were discarded for not satisfying the inclusion criteria, and 435 being duplicated or published in books or conferences. Hence, 15 articles were elected. By applying quality criteria, we then selected six studies to compose this review. Such researches featured registries from the American (3), European (2), and Oceania (1) continent. All the studies specified the methods for data capture and the patients' recruitment process for the registers.

Discussions: From the analysis of the selected papers and reported models, it is noticeable that most studies focused on the prospect of obtaining data to characterize research on epidemiological studies. Demographic data (ID01) are present in all the registries, representing the main collected data category. Furthermore, the general health history (ID02) is present in 50% of the registries analyzed. Characteristics such as access control, confidentiality and data curation. We observed that 50% of the registries comprise a patient-focused web-based self-report system.

Conclusion: The development of robust, interoperable, and secure electronic registries that generate value for research and patients presents itself as a solution and a challenge. This systematic review demonstrated the success of a population register requires actions with well-defined development methods, as well as the involvement of various actors of civil society.

Keywords: Amyotrophic lateral sclerosis; Global health; Motor neuron disease; National databases of epidemiological; Rare disease registries.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Protocol for execution of the systematic review
Fig. 2
Fig. 2
Execution of the study selection protocol in the systematic review
Fig. 3
Fig. 3
Map of the main registries developed between the years 2010 and 2017 by the literature. Figure 3 was produced by the authors using canvas (https://www.canva.com/). Images are available for free Canvas for Education
See this image and copyright information in PMC

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