Making HD Voices Heard

NCT05268029 | Completed

• 1 other identifier: Making HD Voices Heard
• Study Type: observational
• Target: 698
• Locations: 1 country
• Sites: 1

Brief Summary

The Pilot Study, Making HD Voices Heard, will ask people living with HD to report what they experience and how they function.

Conditions

Huntington Disease

Outcome Measures

Primary Outcomes (3)

• The ability to successfully consent and enroll at least 200 HD participants who have early to mid-stage manifest HD.

  Ability to successfully consent and enroll at least 200 manifest HD participants (independent or with help of assistants) within three months as measured by the number of help line calls or emails received requesting technical or clinical support.

  3 months

• Participants' ability to successfully complete online self-reported questionnaires.

  Participants' ability to successfully complete online self-reported questionnaires as measured by the number of completed questionnaires.

  3 months

• Utility and informativeness of data collected.

  Utility and informativeness of capturing, extracting, curating, and analyzing verbatim responses to open-ended questions in the form of the HD-Patient Report of Problems (HD-PROP).

  9 months

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Individuals who have been diagnosed with Huntington disease.

You may qualify if:

• Adults age 18 years and older
• Willing and able to provide informed consent electronically.
• Individuals answering as a participant must self-report they have been diagnosed with HD by a doctor.
• Ability to answer online questions or direct someone else to enter answers for them.
• Ability to ambulate independently and take care of some of his or her personal needs.
• Ability to read and understand English.
• Willing to create a unique identifier based on personal demographic information.
• Residing in the United States or its territories
• Owning or having access to an electronic device and secure internet connectivity

Sponsors & Collaborators

• Huntington Study Group: lead

Study Sites (1)

Huntington Study Group

Rochester, New York, 14618, United States

Location

MeSH Terms

Conditions

Huntington Disease

Condition Hierarchy (Ancestors)

Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Dementia; Chorea; Dyskinesias; Movement Disorders; Heredodegenerative Disorders, Nervous System; Neurodegenerative Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Cognition Disorders; Neurocognitive Disorders; Mental Disorders

Study Officials

• Karen E Anderson, MD

  Georgetown University

  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: December 27, 2021
• First Posted: March 7, 2022
• Study Start: March 23, 2022
• Primary Completion: October 11, 2023
• Study Completion: October 11, 2023
• Last Updated: October 12, 2023

Record last verified: 2023-10

Locations

US (1)