Social network analysis in ataxia patients: exploring correlations with quality of life and functional outcomes
The potential importance of social networks for quality of life and wellbeing in patients with ataxia has received little attention to date. We aim to explore the importance of social connectivity in the ataxia community. We will achieve this by collecting survey data from patients with spinocerebellar ataxia regarding their social networks, quality of life, and physical function. This study will help determine whether someone’s social circle impacts their disease and overall wellbeing, and we will then be in position to use this information to develop novel approaches to improve the lives of individuals with ataxia.
About the Study
Eligible Ataxia Types
Spinocerebellar Ataxias (all types)
Type of Study
Survey
Clinical Trial Phase
N/A
Age Range
Adult 18+
Study Start Date
02/01/2024
Estimated Completion Date
01/31/2025
IRB Approval #
2023P003528
Location(s)
Remote Study
Massachusetts General Hospital
100 Cambridge Street
Boston, MA
Contact Information
James Concepcion
jconcepcion2@mgh.harvard.edu
617-726-4961
What does participation in the study entail?
We ask that you join us for a one-time 1 hour meeting on Microsoft Teams to complete five surveys with our research coordinator.
What are the potential benefits for participants?
No direct benefit to research and control subjects is anticipated.
What are the potential risks for participants?
The risks associated with this study are minimal. The cognitive scales may cause minor anxiety, emotional distress, or discomfort due to sensitive topics being discussed.
Is there financial compensation?
No.
Is there travel reimbursement?
No.
Who is eligible?
We are looking for people who are 18 years or older, diagnosed with spinocerebellar ataxia, and English-speaking.
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