Making HD Voices Heard

Huntington Study Group

Status: Completed

Conditions: Huntington Disease

Study type: Observational

Funder types: NETWORK

Identifiers

NCT05268029

Making HD Voices Heard

Details and patient eligibility

About

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

Full 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.

Enrollment: 698 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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.