NCT06343220

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.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
131

participants targeted

Target at P50-P75 for all trials

Timeline
Completed

Started Apr 2024

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

March 26, 2024

Completed
7 days until next milestone

First Posted

Study publicly available on registry

April 2, 2024

Completed
8 days until next milestone

Study Start

First participant enrolled

April 10, 2024

Completed
1.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 22, 2025

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

December 22, 2025

Completed
Last Updated

December 23, 2025

Status Verified

December 1, 2025

Enrollment Period

1.7 years

First QC Date

March 26, 2024

Last Update Submit

December 22, 2025

Conditions

Keywords

HSG, HD, Observational

Outcome Measures

Primary Outcomes (2)

  • Examine awareness

    To examine prospective research participants' awareness, willingness, and ability to participate in clinical research for HD.

    December 2024

  • Provide the HD research community with the insight.

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

    December 2024

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodProbability Sample
Study Population

Must either have HD or be at risk for having HD.

You may qualify if:

  • 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

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Huntington Study Group

Rochester, New York, 14618, United States

Location

MeSH Terms

Conditions

Huntington DiseaseCharcot-Marie-Tooth Disease, Axonal, Type 2A2

Condition Hierarchy (Ancestors)

Basal Ganglia DiseasesBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesDementiaChoreaDyskinesiasMovement DisordersHeredodegenerative Disorders, Nervous SystemNeurodegenerative DiseasesGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesCognition DisordersNeurocognitive DisordersMental Disorders

Study Officials

  • Amy Brown, MD, MS

    HSG

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
CROSS SECTIONAL
Sponsor Type
NETWORK
Responsible Party
SPONSOR

Study Record Dates

First Submitted

March 26, 2024

First Posted

April 2, 2024

Study Start

April 10, 2024

Primary Completion

December 22, 2025

Study Completion

December 22, 2025

Last Updated

December 23, 2025

Record last verified: 2025-12

Data Sharing

IPD Sharing
Will share

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. Answers to these questions will provide valuable information to the HD research community when designing and conducting drug trials and observational studies.

Time Frame
2024

Locations