Understanding the Patient Experience with Genetic Testing for Ataxias
The goal of this study is to understand the experience of going through genetic testing for Ataxia by surveying a national registry of patients.
Link to Survey: https://forms.office.com/r/P1YA0RpFS1
About the Study
Eligible Ataxia Types
All Ataxias for which genetic testing was considered or performed.
Type of Study
Survey
Clinical Trial Phase
N/A
Age Range
Children and Adults
Study Start Date
07/01/2024
Estimated Completion Date
06/30/2025
IRB Approval #
HUM00256051
Location(s)
Virtual Study
Contact Information
Sharan Srinivasan
sharans@med.umich.edu
734-615-8116
What does participation in the study entail?
Completion of a one-time survey. This survey only asks about age, sex, and a final diagnosis (if found). No other identifying information is requested.
What are the potential benefits for participants?
Participants may use this survey to better reflect on their own experiences so that we providers may improve the overall flow for future patients.
What are the potential risks for participants?
There is no predicted risk for participants as no intervention is being performed.
Is there financial compensation?
No.
Is there travel reimbursement?
No. Not applicable.
Who is eligible?
All patients, including children and adults over 18 years are eligible to participate as long as genetic testing was at least considered, and/or performed, as part of the diagnostic workup.
Additional Information or Resources
Link to Complete Survey: https://forms.office.com/r/P1YA0RpFS1
View Other Research Opportunities
Spinocerebellar Ataxia Patient Feedback Survey
The survey aims to gather opinions about Antisense Oligonucleotide (ASO) therapy research, and the information gathered will be used to help develop future clinical studies for ataxia. Link to Enroll: Read More…
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 Read More…
Phase 3 Efficacy and Durability of Ampreloxetine for the Treatment of Symptomatic NOH in Participants with Multiple System Atrophy (CYPRESS)
This is a Phase 3, multi-center, randomized withdrawal study to evaluate the efficacy and durability of ampreloxetine in participants with MSA and symptomatic nOH after 20 weeks of treatment. This Read More…
