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Rare Patient Voice Surveys

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

View Other Research Opportunities

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…

Read More »

PATH

Proactive Approaches to Health for Asymptomatic Adults at Risk for Neurodegenerative Conditions The aim of this study is to assess the needs of asymptomatic adults at-risk to carry a pathogenic Read More…

Read More »

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

View Other Research Opportunities

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…

Read More »

PATH

Proactive Approaches to Health for Asymptomatic Adults at Risk for Neurodegenerative Conditions The aim of this study is to assess the needs of asymptomatic adults at-risk to carry a pathogenic Read More…

Read More »
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