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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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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\u2019 recruitment process for the registers.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Discussions<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12883-021-02298-2","type":"journal-article","created":{"date-parts":[[2021,7,6]],"date-time":"2021-07-06T06:03:02Z","timestamp":1625551382000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases"],"prefix":"10.1186","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5696-4114","authenticated-orcid":false,"given":"Ingridy","family":"Barbalho","sequence":"first","affiliation":[]},{"given":"Ricardo","family":"Valentim","sequence":"additional","affiliation":[]},{"given":"M\u00e1rio Dourado","family":"J\u00fanior","sequence":"additional","affiliation":[]},{"given":"Daniele","family":"Barros","sequence":"additional","affiliation":[]},{"given":"H\u00e9rcules Pedrosa","family":"J\u00fanior","sequence":"additional","affiliation":[]},{"given":"Felipe","family":"Fernandes","sequence":"additional","affiliation":[]},{"given":"C\u00e9sar","family":"Teixeira","sequence":"additional","affiliation":[]},{"given":"Tha\u00edsa","family":"Lima","sequence":"additional","affiliation":[]},{"given":"Jailton","family":"Paiva","sequence":"additional","affiliation":[]},{"given":"Danilo","family":"Nagem","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2021,7,6]]},"reference":[{"issue":"5","key":"2298_CR1","doi-asserted-by":"publisher","first-page":"1193","DOI":"10.1007\/s10072-011-0888-6","volume":"33","author":"F Pagnini","year":"2012","unstructured":"Pagnini F, Lunetta C, Banfi P, Rossi G, Fossati F, Marconi A, Castelnuovo G, Corbo M, Molinari E. 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