Understanding People’s Experiences of the Enroll-HD Study
Research type
Research Study
Full title
Understanding People’s Experiences of the Global, Longitudinal Enroll-HD study: A Qualitative Study
IRAS ID
223027
Contact name
Ellice G Parkinson
Contact email
Sponsor organisation
BSMHFT
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
This study aims to explore the experience of participants, and their caregivers, of the Enroll-HD study. This study also aims to explore why people take part in the Enroll-HD study, and why caregivers support their participation in the study. This study will also explore what would improve the study experience for its participants and caregivers. The Enroll-HD study is a worldwide, observational, longitudinal study which recruits people from families affected by Huntington’s disease. This study aims to recruit participants from each of the Enroll-HD study participant categories: people who carry the mutated HD gene; people who did not inherit the mutated HD gene from their affected parent; people who are at risk of having the gene but have not been tested; and partners/spouses of someone with the mutated HD gene. This study aims to recruit 20 participants in total; 10 individuals who have experience of participating in the Enroll-HD study and 10 caregivers who have experience of supporting a friend/partner/relative to Enroll-HD study visits. This study will be based at the Barberry Hospital, Birmingham, where people attend their Huntington’s disease clinic appointments and Enroll-HD study visits. Enroll-HD participants and their caregivers will be invited to attend one semi-structured face-to-face interview, which aims to be no longer than one hour. Enroll-HD participants will be asked about their experience of the study and their reasons for participating, and/or no longer participating, whilst caregivers will be asked about their experience of supporting someone to an Enroll-HD study visit, and their reasons for doing so.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
17/WM/0121
Date of REC Opinion
26 Jun 2017
REC opinion
Further Information Favourable Opinion