AI Article Synopsis
- The Global Multiple System Atrophy Registry (GLOMSAR), created in 2013, is an online platform where patients or caregivers can self-report information about multiple system atrophy (MSA).
- The study aimed to analyze the demographics of GLOMSAR participants and gather data from a symptom-focused online questionnaire, with 33% of the 1083 participants completing it.
- Findings revealed that many symptoms, like memory issues and visual hallucinations, are commonly reported by patients but often overlooked in traditional physician studies, emphasizing the importance of patient experiences in MSA research.
Article Abstract
Background: The Global Multiple System Atrophy Registry (GLOMSAR) was established in 2013. It is an online patient-reported contact registry open and free that relies on self-reported diagnosis by the patient or caregiver.
Objectives: To report the demographics of patients enrolled in GLOMSAR and the results of an ancillary online symptom questionnaire.
Methods: Patients enrolled in GLOMSAR were invited to complete a custom-designed online questionnaire about disease onset and symptom prevalence.
Results: At the time of writing, there were 1083 participants in GLOMSAR, of which 33% (365) completed the questionnaire. The onset and frequency of most symptoms was similar to those reported in the literature in physician-reported studies. Some were understudied or not typically associated with multiple system atrophy (MSA), including reduced female sexual sensation (55%), forgetfulness (60%), pseudobulbar affect (37%), olfactory changes (36%), and visual hallucinations (21%).
Conclusions: Patient-reported studies and ancillary online questionnaires are valid, underused research tools useful to advance our knowledge on understudied MSA features and highlight the patients' voice.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9547130 | PMC |
| http://dx.doi.org/10.1002/mdc3.13544 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!