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01-12-2021 | Amyotrophic Lateral Sclerosis | Research article

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

Authors: Ingridy Barbalho, Ricardo Valentim, Mário Dourado Júnior, Daniele Barros, Hércules Pedrosa Júnior, Felipe Fernandes, César Teixeira, Thaísa Lima, Jailton Paiva, Danilo Nagem

Published in: BMC Neurology | Issue 1/2021

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.

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Title: National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases
Authors: Ingridy Barbalho
Ricardo Valentim
Mário Dourado Júnior
Daniele Barros
Hércules Pedrosa Júnior
Felipe Fernandes
César Teixeira
Thaísa Lima
Jailton Paiva
Danilo Nagem
Publication date: 01-12-2021
Publisher: BioMed Central
Keyword: Amyotrophic Lateral Sclerosis
Published in: BMC Neurology / Issue 1/2021
Electronic ISSN: 1471-2377
DOI: https://doi.org/10.1186/s12883-021-02298-2

2024 ASCO Annual Meeting

Springer Medicine

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

Abstract

Background

Methods

Results

Discussions

Conclusion

2024 ASCO Annual Meeting

Springer Medicine

Abstract

Background

Methods

Results

Discussions

Conclusion

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