The Spinocerebellar Ataxia Health Index Study
We are measuring the prevalence and impact of symptoms on patients with spinocerebellar ataxia (SCA). This study is being conducted by Dr. Chad Heatwole from the University of Rochester. The study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with SCA.
Link to Enroll: https://redcap.link/SCAsurvey
About the Study
Eligible Ataxia Types
All SCA types
Type of Study
Survey
Clinical Trial Phase
N/A
Age Range
Adult 18+
Study Start Date
02/05/2025
Estimated Completion Date
06/05/2025
IRB Approval #
STUDY00009204
Location(s)
University of Rochester
Saunders Research Building
265 Crittenden Blvd, CU 420694
Rochester, NY
Contact Information
Preshetha Kanagaiah
preshetha.kanagaiah@chet.rochester.edu
585-210-2563
What does participation in the study entail?
Participation in this research entails completing an online survey containing personal questions about the individual’s specific symptoms that have the greatest impact. The survey will take approximately 20-30 minutes to complete.
What are the potential benefits for participants?
The study subjects will not directly benefit from this research.
What are the potential risks for participants?
There is little to no risk of physical injury to the subjects in this study. One possible psychological risk to the patients in this study is the mild stress associated with answering questions about their health. There is a potential for invasion of privacy or breach in confidentiality.
Is there financial compensation?
No.
Is there travel reimbursement?
No.
Who is eligible?
Subjects with SCA participating without a proxy must: 1) Be 18 years or older; 2) Be diagnosed with spinocerebellar ataxia based on report from their physician or through a registered registry.
Those with limited autonomy or those in subordinate positions as well as children, prisoners and persons with decisional incapacity will not be selected to participate in this study. In addition, this survey is all inclusive of patients with SCA interested nationally and internationally.
Additional Information or Resources
Information Flyer: Download
Link to Enroll: https://redcap.link/SCAsurvey
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