Huntington Disease
Conditions
Keywords
HSG, HD, Observational
Brief summary
The Project AWARE 2.0 Survey is intended to gain knowledge about the feelings, attitudes, and beliefs of HD family members, care partners and others affected by HD towards the way drug trials and observational studies are communicated and conducted.
Detailed description
The Project AWARE 2.0 Survey will be offered to HD families via HSG's online platform called myHDstory®. The survey will obtain input and knowledge about their feelings, attitudes, and beliefs concerning clinical research and the process by which HD studies are communicated and conducted. Project AWARE 2.0 is intended to provide the HD research community with the insight and tools to help (a) improve prospective research participants' awareness, willingness, and ability to participate in clinical research for HD; and (b) design clinical studies and trials in the future.
Interventions
None listed
Sponsors
Roche Products Limited
Neurotargeting LLC
Huntington Study Group
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
\-
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Examine awareness | December 2024 | To examine prospective research participants' awareness, willingness, and ability to participate in clinical research for HD. |
| Provide the HD research community with the insight. | December 2024 | Provide the HD research community with insight to design clinical studies and trials in the future. |
Countries
United States
Outcome results
None listed