Making HD Voices Heard

NCT ID: NCT05268029

Last Updated: 2023-10-12

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

698 participants

Study Classification

OBSERVATIONAL

Study Start Date

2022-03-23

Study Completion Date

2023-10-11

Brief Summary

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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.

Detailed Description

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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.

Conditions

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Huntington Disease

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Eligibility Criteria

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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
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Huntington Study Group

NETWORK

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Karen E Anderson, MD

Role: PRINCIPAL_INVESTIGATOR

Georgetown University

Locations

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Huntington Study Group

Rochester, New York, United States

Site Status

Countries

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United States

Other Identifiers

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Making HD Voices Heard

Identifier Type: -

Identifier Source: org_study_id

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