Huntington Disease
Conditions
Brief summary
The Pilot Study, Making HD Voices Heard, will ask people living with HD to report what they experience and how they function.
Detailed description
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.
Interventions
None listed
Sponsors
Huntington Study Group
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| The ability to successfully consent and enroll at least 200 HD participants who have early to mid-stage manifest HD. | 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. | 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. | 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). |
Countries
United States
Outcome results
None listed