PATH
Proactive Approaches to Health for Asymptomatic Adults at Risk for Neurodegenerative Conditions
The aim of this study is to assess the needs of asymptomatic adults at-risk to carry a pathogenic mutation associated with Ataxia conditions. This study also looks at other neurodegenerative conditions such as Huntington’s, ALS, and FTD. We hope identifying these needs can help us to to facilitate better care for this population in the future through an at-risk clinical center
Link to Enroll: https://survey.qualtrics.emory.edu/jfe/form/SV_8cvxUc9lUczdeLk
Disclaimer: This research opportunity is not affiliated with NAF. We are sharing this information as a resource for the Ataxia community. Sharing this information does not imply endorsement by NAF.
About the Study
Eligible Ataxia Types
All types that have a potential genetic cause
Type of Study
Survey
Clinical Trial Phase
N/A
Age Range
18+
Study Start Date
05/01/2025
Estimated Completion Date
10/01/2025
IRB Approval #
00009431
Location(s)
Emory University Genetic Counseling Training Program
Virtual Survey
Contact Information
Caroline Shagena
cshagen@emory.edu
410-662-2480
What does participation in the study entail?
Participation requires completion of a 10 minute survey. We will not collect any personal information and you are able to stop the survey at any time.
What are the potential benefits/risks for participants?
There are no direct benefits through participating in this research. We hope what we learn can be used to benefit others in the future.
Is there financial compensation?
No.
Is there travel reimbursement?
No.
Who is eligible?
You may participate in this survey if you meet the following eligibility criteria: 18+ years of age, can read English, and currently live in the United States. Participants must have no symptoms of the neurological disorder and a family member or themselves must have a genetic mutation for the conditions stated.
Additional Information or Resources
Link to Enroll: https://survey.qualtrics.emory.edu/jfe/form/SV_8cvxUc9lUczdeLk
Download Study Poster: Click Here
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