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.
Link to Enroll: https://umich.qualtrics.com/jfe/form/SV_3qsNTK5Kj3wf9KS
About the Study
Eligible Ataxia Types
SCAs 1,2,3,6,7,8,10,12,27B, FRDA, RFC1/CANVAS, FXTAS, AT, EA1/2
Type of Study
Survey
Clinical Trial Phase
N/A
Age Range
Adult 18+
Study Start Date
07/28/2024
Estimated Completion Date
12/31/2026
IRB Approval #
HUM00255285
Location(s)
University of Michigan
109 Zina Pitcher Place, BSRB 4007
Ann Arbor, MI
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 is anonymous, asking only country of practice. No other identifying information is requested.
What are the potential benefits for participants?
The results of this study will inform the greater ataxia community about the international prevalence of various hereditary ataxias by country of clinical care. Further, analysis of prescribing habits will allow clinicians to learn from each other and potentially improve patient outcomes.
What are the potential risks for participants?
There is no active intervention being performed and therefore no risk to participants.
Is there financial compensation?
No.
Is there travel reimbursement?
No.
Who is eligible?
Any clinician caring for patients with ataxia is eligible to take this survey.
Additional Information or Resources
Link to Enroll: https://umich.qualtrics.com/jfe/form/SV_3qsNTK5Kj3wf9KS
View Other Research Opportunities
Deep Brain Stimulation of the Deep Cerebellar Nuclei in Subjects with Spinocerebellar Ataxia: A Safety and Feasibility Study
The goal/purpose of the study is to evaluate the safety and feasibility of deep brain stimulation (DBS) in the deep cerebellar nuclei (DCN) in patients with Spinocerebellar Ataxia (SCA) types Read More…
Clinical Outcome Assessment and Treatment Monitoring Markers for Clinical Trial Readiness in FXTAS
The purpose of this research is to prepare for future FXTAS (fragile X-associated tremor/ataxia syndrome) clinical trials by establishing a set of accurate and clinically important measures to sensitively track Read More…
The role of the cerebellum in speech production
This research aims to characterize the role of the cerebellum in speech motor control. This work will help us understand how the cerebellum works and may lead to the development Read More…
