Making HD Voices Heard

Huntington Study Group698 enrolled

Overview

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

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.

Study Type

OBSERVATIONAL

Enrollment

698

Conditions

Huntington Disease

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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.

Locations (1)

Huntington Study Group

Rochester, New York, United States

Outcomes

Primary Outcomes

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.

Time frame: 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.

Time frame: 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).

Time frame: 9 months

Data from ClinicalTrials.gov

This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.