Making HD Voices Heard - A Pilot Study on the myHDstory™ Platform
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 698
- 试验地点
- 1
- 主要终点
- The ability to successfully consent and enroll at least 200 HD participants who have early to mid-stage manifest HD.
研究概览
简要总结
The Pilot Study, Making HD Voices Heard, will ask people living with HD to report what they experience and how they function.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •An individual who does not meet all the inclusion criteria will be excluded from participation in this study.
结局指标
主要结局
The ability to successfully consent and enroll at least 200 HD participants who have early to mid-stage manifest HD.
时间窗: 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.
时间窗: 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.
时间窗: 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).
次要结局
未报告次要终点