“It’s being part of the big picture, even though you’re a tiny jigsaw piece”—motivations and expectations of individuals participating in the Enroll-HD observational study

Abstract

Predictive test guidelines for Huntington's disease (HD) recommend individuals are offered opportunities to participate in research regardless of test outcome. Consistent with most HD centres of excellence, the Manchester Centre for Genomic Medicine (MCGM) invites eligible individuals to participate in the observational study, Enroll-HD. Limited research has been conducted to date on the views of research participants and the possible impact of participation. The aim of this qualitative study was to explore the experiences of ten individuals taking part in the Enroll-HD study following pre-symptomatic testing for HD. Half of the individuals had tested positive for the HD mutation and the other half had tested negative. Participants were generally motivated to take part in the study by both personal and altruistic reasons. Overall, they were very positive about participation in Enroll-HD. Valuable aspects included good relationships with the research/clinical team, increased understanding of the condition, an enhanced self-image and a shared experience with affected parents. Issues for improvement to encourage participation included access to study site and more regular communication about study progress. Participants, while generally optimistic about research progress, were realistic about challenges.

Investigating people’s attitudes towards participating in longitudinal health research: an intersectionality-informed perspective

“…For participants, the paper has documented the specific social practices wherein the production and circulation of longitudinal health data is not only cast as a non-negotiable good, but also as a form of civic contribution and a source of social recognition. Akin to what Davies et al [ 18 ] have framed as ‘being part of the big picture’, participants cast population-based health research as a site of distinction where they can make a difference but also where they are being recognised as distinct or special. At the heart of this is a shared culture or value system that teleologically enacts health research as a universal force for societal and individual progress.…”

Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey Conducted by the European Huntington Association

“…This finding consubstantiates recent reports. In HD, Davies et al [ 50 ] showed that having a good relationship and a regular communication with the study team, and improving the access to the study site would encourage participation in the Enroll-HD study [ 8 , 9 ]; in PD, de Melo-Martín et al [ 35 ] demonstrated the relevance of building trusting relationships to facilitate research participation; in AD, Boada et al [ 28 ] concluded that improving communication, offering regular feedback, and building trustful relationships are key factors to increase trial engagement and retention. Hence, similarly to what happens in other neurodegenerative conditions, enhancing the communication and trust between potential research participants and health professionals and providing continuous support to individuals with HDRisk and PreHD seem to be critical to increase research adherence and ensure that the specific needs of these groups are being understood and met [ 28 ].…”