K016 Understanding the experience of research among young people impacted by Huntington’s disease

<h3>Background</h3> HDYO is an international non-profit organization providing support, information and resources to young people impacted by HD. HDYO launched a series of surveys to better understand the global needs of young people. <h3>Aims</h3> We present data from our second survey, exploring the experience of clinical research among young people impacted by HD. <h3>Methods</h3> Participants provided informed consent prior to completing an anonymous, online questionnaire, available in six languages. Human research ethics approval was provided by Monash University. <h3>Results</h3> Between January and May 2024, 112 eligible people responded to the survey. Respondents lived in Europe (42%), with further representation across North America (25%), South America (19%), Asia (6%) and Oceania (6%); 86% identified as female. Most respondents were gene-positive (47%), 18% were gene-negative, and 36% were gene-unknown. When rating their knowledge of key research terms, many respondents had limited or no knowledge of commonly used terms such as open-label studies (58%), primary endpoints (68%) or safety monitoring committees (70%). Respondents had relatively better understanding of observational studies, interventional studies and placebos, however 32%, 39% and 36% of respondents respectively still rated having limited or no knowledge of these terms. The most common barrier to participating in research was distance from a study site (18%) time away from work (14%) and anxiety about study procedures or side effects (11%). Financial assistance was the most frequently cited recommendation to increase participation. <h3>Conclusions</h3> Results of this survey are relevant to HD associations and industry partners seeking to engage young people in clinical research.