Rare Patient Voice Surveys
Rare Patient Voice, LLC connects patients and family caregivers of rare and non-rare diseases with opportunities to share their opinions with companies and researchers by participating in all types of research studies. These include surveys and phone interviews, online bulletin boards, focus groups, clinical trials, and more.
Link to Register: rarepatientvoice.com/nationalataxiafoundation
About the Study
Eligible Ataxia Types
Multiple forms of Ataxia, varies by survey
Type of Study
Survey
Clinical Trial Phase
N/A
Age Range
Adult 18+
What does participation in the study entail?
Varies by survey. Please see individual survey listings at Rare Patient Voice for details.
What are the potential benefits for participants?
Varies by survey. Please see individual survey listings at Rare Patient Voice for details.
What are the potential risks for participants?
Please see individual survey listings at Rare Patient Voice for details.
Is there financial compensation?
Yes. The exact amount varies by survey. Please see individual survey listings at Rare Patient Voice for details.
Is there travel reimbursement?
Not applicable.
Who is eligible?
Varies by survey. Please see individual survey listings at Rare Patient Voice for details.
Additional Information or Resources
Link to Register: rarepatientvoice.com/nationalataxiafoundation
View Other Research Opportunities
Safety, Empowerment, and Dignity: Improving the Airport Journey of Customers Using Wheelchairs
InterVISTAS is currently collaborating with Indiana University – Bloomington (IUB) to collect information on the air travel experiences of people with disabilities. This project strives to identify ways to enhance Read More…
Personal Growth Scale for Family Caregivers
The purpose of this research study is to learn about how families of individuals with Hereditary Ataxia (HA) experience positive outcomes as a result of being caregivers. The objective of Read More…
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…
