Objective: To create a database coordinating individual MSA study groups of the Pan American region with the required standards by the Global MSA Registry, as previously suggested by the MDS MSA study Group.

Background: Multiple system atrophy (MSA) is a rare sporadic progressive neurological disorder with an estimated prevalence of 4 in every 100,000 people. The low prevalence rate prevents individual research sites from studying sufficient number of patients. We previously, conducted a retrospective, observational, cross-sectional Pan-American multicentre cohort study of MSA. Here we propose a prospective study.

Methods: A system with web domain easy to use was developed to gather information on MSA. The site has a restricted access for site investigators who participate in the project and will collect de-identified information to protect patient confidentiality. The site has a dynamic architecture. It will collect epidemiologic and demographic data; premotor symptoms, a detailed neurologic examination findings to provide the phenotype, clinical classification (possible, probable), presentations including motor and non motor symptoms and signs; psychiatric and sleep disturbances; Hoehn and Yahr scale and total MDS UMSARS scores; pharmacological and non-pharmacological treatment of sexual dysfunction, urinary and orthostatic hypotension, sleep, cognitive, psychiatric as well Parkinsonian syndrome and associated complications. Ancillary, information will include Brain MRI findings, neuropsychological tests as well as the first degree family data.

Results: The example trial pilot of database is available at link http://www.panmsa.com.

Conclusions: The PANMSA database will allow users of South, Central and North America, to collect data that will determine clinical epidemiological and demographic data that will lead to a more focused research or clinical efforts. The PANMSA patient database will also improve collaborative research opportunities with the Global MSA Registry.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/pan-american-multiple-system-atrophy-panmsa-consortium-database/