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Patient-Reported Symptoms in the Global Multiple System Atrophy Registry
Jose-Alberto Palma1, Florian Krismer2, Wassilios G Meissner3,4,5,6
1Department of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.
Movement Disorders Clinical Practice
|October 17, 2022
Summary
The Global Multiple System Atrophy Registry (GLOMSAR) collected patient-reported data on multiple system atrophy (MSA) symptoms. Findings highlight understudied symptoms, emphasizing the value of patient voices in research.
Area of Science:
- Neurology
- Patient-reported outcomes
- Rare diseases
Background:
- The Global Multiple System Atrophy Registry (GLOMSAR) is a free, online patient-reported registry established in 2013.
- It relies on self-reported diagnoses from patients or caregivers for individuals with multiple system atrophy (MSA).
Purpose of the Study:
- To detail the demographics of patients registered in GLOMSAR.
- To present findings from an online symptom questionnaire administered to GLOMSAR participants.
Main Methods:
- Participants within the GLOMSAR registry were invited to complete a custom online questionnaire.
- The questionnaire focused on disease onset and the prevalence of various symptoms associated with MSA.
Main Results:
- 1083 participants were enrolled in GLOMSAR, with 365 (33%) completing the questionnaire.
- Symptom onset and frequency generally aligned with literature from physician-reported studies.
- Understudied symptoms included reduced female sexual sensation (55%), forgetfulness (60%), pseudobulbar affect (37%), olfactory changes (36%), and visual hallucinations (21%).
Conclusions:
- Patient-reported studies and online questionnaires are valuable, underutilized research tools.
- These methods can enhance understanding of understudied features of multiple system atrophy (MSA).
- They effectively amplify patient perspectives in research.
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