K016 Understanding the experience of research among young people impacted by Huntington’s disease
Year: 2024
Type: conference-abstract
Abstract: Background 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. Aims We present data from our second survey, exploring the experience of clinical research among young people impacted by HD. Methods Participants provided informed consent prior to completing an anonymous, online questionnaire, available in six languages. Human research ethics approval was provided by Monash University. Results 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. Conclusions Results of this survey are relevant to HD associations and industry partners seeking to engage young people in clinical research.
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4402373662