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
Further Development and Validation of the Cerebellar Neuropsychiatric Rating Scale (CNRS)
There are many scales that assess the disruption of drive, motivation, mood, impulsivity, anxiety,and social cognition, in patients with psychiatric illness. However, no single scale covers theissues that we have Read More…
Clinical Care of Ataxia Patients
The goal of this study is to better understand the clinical practices of providers caring for patients with hereditary ataxias. This includes geographic estimates of patient prevalence and prescription habits. Read More…
The role of the cerebellum in movement and cognition
The aim of this study is to characterize how Ataxia impacts motor control and certain aspects of cognition (such as language and decision making). Link to Enroll: http://ivrylab.berkeley.edu/participate.html About the Read More…
