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Background The development of effective therapies for Huntington’s disease (HD) requires an active, informed, and lasting commitment from HD families to research. Specifically, those traditionally less involved in studies should be heard and engaged in this process: persons at risk for HD (HDRisk) and persons with premanifest HD (PreHD). Aim To determine which factors affect the willingness of persons with HDrisk and PreHD to participate in research and check for differences related to HD status. Methods The European Huntington Association (EHA) created an online survey to assess the perceptions and experiences about research participation among persons with HDRisk and PreHD. The two groups were compared on their answers to questions about research experience and knowledge, sources of information about research, the importance of reasons for getting involved and not getting involved in studies, and factors preventing and facilitating study participation. Results/Outcome The survey was filled by 263 persons with HDRisk and 262 persons with PreHD. While the overall motivation of both groups to engage in research was high, respondents with PreHD reported significantly more research experience and better research knowledge than respondents with HDRisk. Respondents with HDRisk identified more barriers to research participation and the need for more support to engage in studies compared to respondents with PreHD. Conclusions Motivation to take part in studies is high, despite limited research experience and literacy. This motivation is strongly influenced by HD status. Our findings highlight the relevance of planning tailored interventions to better support an informed participation of specific HD groups in research.

Background Using wearable activity trackers (WATs) to understand lifestyle behaviours in people with Huntington’s disease (HD) is reliant on user acceptance and long-term adoption. Aims To explore HD community members’ views on using WATs to monitor lifestyle behaviour. Methods Individuals with HD and family members/carers (FM-C) were invited to complete a user acceptance questionnaire (available in English, German, Polish and Spanish) and take part in focus groups to explore their opinion towards WATs. Recruitment took place at the 2019 Annual European HD Association meeting and 3 regional UK meetings. The questionnaire consisted of 35 items across 8 domains, plus demographics. Average questionnaire responses were recorded as positive (score>2.5), negative (score Focus group discussions (conducted in English) were driven by a topic guide, vignette-scenario and item ranking exercise. Discussions were audio recorded and thematically analysed. Results 105 completed questionnaires were analysed (47 HD; 58 FM-C). All sections of the questionnaire produced median scores greater than 2.5, representing a tendency for positive opinions towards WATs (being advantageous, easy and enjoyable to use, compatible with lifestyle, able to understand the information from a WAT and having a willingness to wear). HD participants reported a more positive attitude to WATs than FM-C (p=0.017). 15 participants took part in three focus groups. Device compatibility and accuracy, data security, impact on relationships and ability to self-manage and monitor lifestyle behaviours emerged as important considerations in device use/preference. Conclusion Whilst WATs were broadly recognised as acceptable for both monitoring and management, aspects of device design/functionality must be considered to promote acceptance in this clinical cohort.

There has been great progress in Huntington’s disease (HD) research. Yet, effective treatments to halt disease before the onset of disabling symptoms are still unavailable. Scientific breakthroughs require an active and lasting commitment from families. However, they are traditionally less involved and heard in studies. Accordingly, the European Huntington Association (EHA) surveyed individuals at risk (HDRisk) and with premanifest HD (PreHD) to determine which factors affect their willingness to participate in research. Questions assessed research experience and knowledge, information sources, reasons for involvement and noninvolvement, and factors preventing and facilitating participation. The survey included 525 individuals, of which 68.8% never participated in studies and 38.6% reported limited research knowledge. Furthermore, 52% trusted patient organizations to get research information. Reasons for involvement were altruistic and more important than reasons for noninvolvement, which were related to negative emotions. Obstacles included time/financial constraints and invasive procedures, while professional support was seen as a facilitator. PreHD individuals reported less obstacles to research participation than HDRisk individuals. Overall, a high motivation to participate in research was noted, despite limited experience and literacy. This motivation is influenced by subjective and objective factors and, importantly, by HD status. Patient organizations have a key role in fostering motivation through education and support.