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
Ataxia Gene Therapy Survey
The purpose of the study is to collect opinions about gene therapy research from people diagnosed with a genetic ataxia from a number of different countries. People with genetic ataxias Read More…
CLARITY-FA
Characteristics and clinical course of disease in participants with cardiomyopathy associated with Friedreich Ataxia (CLARITY-FA) The goal of the Lexeo sponsored CLARITY-FA natural history study is to learn about how Read More…
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…
