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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) myHDstoryâ„¢ 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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
An individual who does not meet all the inclusion criteria will be excluded from participation in this study.
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Individuals who have been diagnosed with Huntington disease.
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| Name | Affiliation | Role |
|---|---|---|
| Karen E Anderson, MD | Georgetown University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Huntington Study Group | Rochester | New York | 14618 | United States |
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| ID | Term |
|---|---|
| D006816 | Huntington Disease |
| ID | Term |
|---|---|
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| D003704 | Dementia |
| D002819 | Chorea |
| D020820 | Dyskinesias |
| D009069 | Movement Disorders |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D003072 | Cognition Disorders |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |