Clinician Experience with Genetic Testing of Ataxia Patients
The goal of this study is to assess clinician experiences of genetic testing of patients with ataxia, specifically to understand ordering patterns and perceptions on utility of testing.
Link to Survey: https://forms.office.com/r/wvbn0zm6Hi
About the Study
Eligible Ataxia Types
Ataxia Clinicians
Type of Study
Survey
Clinical Trial Phase
N/A
Age Range
Adult 18+
Study Start Date
08/20/2024
Estimated Completion Date
07/30/2025
IRB Approval #
HUM00255285
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 type of provider (neurologist, specialist, GC) and country of practice. No other identifying information is requested.
What are the potential benefits for participants?
The results of this survey will allow participants to understand both testing patterns amongst colleagues around the world, as well as to reflect on the perceived utility of genetic testing.
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?
Not applicable.
Who is eligible?
All providers, including genetic counselors, ataxia neurologists, general neurologists, and other physicians, provided they are actively involved in the genetic counseling and/or testing of patients with ataxia.
Additional Information or Resources
Link to complete survey: https://forms.office.com/r/wvbn0zm6Hi
View Other Research Opportunities
Evaluation of [18F]FD4 PET targeting alpha synuclein in Parkinson Disease and Multiple System Atrophy
FD4 is a new investigational radiotracer or imaging agent that binds to abnormal alpha synuclein, a brain protein that is abnormal in diseases like Parkinson’s Disease and Multiple System Atrophy Read More…
Natural History of and Genetic Modifiers in Spinocerebellar Ataxias Imaging Substudy
To facilitate robust clinical trials, the goal of the imaging sub-study is to discover and validate MRI measures that are sensitive to early and progressive neurodegenerative changes in SCAs. Download Read More…
Assessing Real-World Experiences On SKYCLARYS® (ARIES)
ARIES (Assessing Real-World Experiences on SKYCLARYS®) is a 3 year research study that you can complete from home. There are no in-person visits, blood draws, or physical exams. This new study is Read More…
