Project AWARE 2.0 to Improve Awareness, Willingness and Ability for Research and Enrollment in Clinical Research

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.

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Key information

Conditions

Huntington Disease Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases Charcot-Marie-Tooth Disease, Axonal, Type 2A2 Chorea Cognition Disorders Congenital, Hereditary, and Neonatal Diseases and Abnormalities Dementia Dyskinesias Genetic Diseases, Inborn Heredodegenerative Disorders, Nervous System Mental Disorders Movement Disorders Nervous System Diseases Neurocognitive Disorders Neurodegenerative Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Huntington Study Group

Rochester, New York, 14618, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

Examine awareness

Time frame: 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.

Time frame: December 2024

Provide the HD research community with insight to design clinical studies and trials in the future.

Sponsors and collaborators

Lead sponsor

Huntington Study Group

Network

Collaborators

Neurotargeting LLC
Roche Products Limited

Registry information

Important dates

Study start: 2024
Primary completion: 2025
Study completion: 2025
First posted: Apr 2, 2024
Registry last updated: Dec 23, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed