Survey to improve awareness and participation in Huntington Disease research
Project AWARE 2.0 to Improve Awareness, Willingness and Ability for Research and Enrollment in Clinical Research
Huntington Study Group · NCT06343220
This study is trying to understand how people affected by Huntington Disease feel about clinical research to help improve awareness and encourage more participation in future studies.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 600 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Huntington Study Group (network) |
| Locations | 1 site (Rochester, New York) |
| Trial ID | NCT06343220 on ClinicalTrials.gov |
What this trial studies
Project AWARE 2.0 is a survey designed to gather insights from individuals affected by Huntington Disease (HD), including family members and care partners, regarding their perceptions of clinical research. Conducted through the myHDstory® online platform, the survey aims to assess feelings, attitudes, and beliefs about how drug trials and observational studies are communicated. The goal is to enhance awareness, willingness, and ability to participate in HD clinical research, ultimately informing the design of future studies.
Who should consider this trial
Good fit: Ideal candidates for this survey include individuals aged 18 and older who have Huntington Disease or are at risk of developing it.
Not a fit: Patients who do not have Huntington Disease or are not at risk for it will not benefit from this survey.
Why it matters
Potential benefit: If successful, this initiative could lead to increased participation in clinical research for Huntington Disease, improving the development of effective treatments.
How similar studies have performed: While similar studies focusing on improving research participation have shown promise, this specific approach is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Participants must either have HD or be at risk for having HD * Participants must be 18 years of age or older * Participants must live in the United States * Inclusion of participants will not be based on race, gender, or ethnicity. Exclusion Criteria: -
Where this trial is running
Rochester, New York
- Huntington Study Group — Rochester, New York, United States (RECRUITING)
Study contacts
- Principal investigator: Amy Brown, MD, MS — HSG
- Study coordinator: Lauren Falanga
- Email: info@myhdstory.org
- Phone: 800-487-7671
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Huntington Disease, HSG, HD, Observational