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

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.

Electronic health records in Brazil: Prospects and technological challenges

“…And this issue is compounded by situations in which patients needing multidisciplinary monitoring have their information collated by several practitioners. Hence, monitoring disease courses becomes even more detrimental ( 32 , 33 ).…”

Digital Alternative Communication for Individuals with Amyotrophic Lateral Sclerosis: What We Have

“…ALS is considered rare, and, despite efforts to seek digital health solutions, there are still significant challenges to be tackled: these include the need for more data, studies, and evidence on disease incidence and prevalence, which are essential but scarce pieces of information in the context of global health [ 12 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 , 99 , 100 , 101 , 102 , 103 , 104 , 105 , 106 , 107 ]. There are few records or epidemiological studies in Brazil, and only two studies at national level have been mentioned in the scientific literature.…”

“…More recently, when analyzing the period from 2004 to 2013, the researchers Moura et al [ 109 ] estimated the average incidence of ALS to be 0.461 cases per 100,000 inhabitants (with a trend of increasing incidence over the years), a rate similar to that of Dietrich-Neto et al [ 108 ]. It is worth mentioning that, in Brazil, until 2019, there was no compulsory notification system or national registry of Amyotrophic Lateral Sclerosis, which may have led to under-reporting [ 107 , 110 ].…”

Epidemiological Surveillance of Amyotrophic Lateral Sclerosis: A Review

“…There are also considerations such as the collaborative involvement of hospital networks and local clinics to ensure sufficient coverage for patient recruitment, neurologists that can validate clinical criteria for diagnosis, and resources dedicated to databases that house, maintain, and update data, securely. [2] These are luxuries that are not afforded to researchers everywhere in the world. Nevertheless, there is value in the development and implementation of registries in smaller geographic areas.…”