Making HD Voices Heard | Clinical Trial

Key information

Conditions

Huntington Disease Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases 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 Huntington Study Group (HSG) myHDstory™ Platform is an online, observational research platform that will host the Pilot Study, Making HD Voices Heard. The Pilot Study will ask people living with HD to report what they experience and how they function. Participants will provide self-reported information using their own compatible smartphones, laptops, desktops, or tablets. Participants will be asked to reply to a series of questions, including open-ended questions that will be transcribed by voice (microphone voice-to-text transcription) or keyboard-entered text to record what they experience in their own words.

Who can participate

Healthy volunteers accepted: No

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

Inclusion criteria

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

Exclusion criteria

An individual who does not meet all the inclusion criteria will be excluded from participation in this study.

Treatment and study plan

Primary outcomes

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

Time frame: 3 months

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

Time frame: 3 months

Participants' ability to successfully complete online self-reported questionnaires as measured by the number of completed questionnaires.
Utility and informativeness of data collected.

Time frame: 9 months

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).

Sponsors and collaborators

Lead sponsor

Huntington Study Group

Network

Registry information

Official study title

Making HD Voices Heard - A Pilot Study on the myHDstory™ Platform

Important dates

Study start: 2022
Primary completion: 2023
Study completion: 2023
First posted: Mar 7, 2022
Registry last updated: Oct 12, 2023

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