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. There is limited research focused on understanding the global needs of young people impacted by HD. HDYO launched a series of surveys to improve understanding of these needs. These surveys explore the resources used, challenges accessing resources and the community perspectives and experiences with HD research. Objective We present data from our first survey, exploring resource utilization and unmet needs of young people impacted by HD. Method Participants provided informed consent prior to completing an anonymous, online questionnaire. Human research ethics approval was provided by Monash University. Results will be updated with current information closer to EHDN Between March 2023 and February 2024, 321 eligible people responded to the survey, of whom 247 (77%) identified as female and 86% were white. Most respondents (55%) were between 18 and 35 with the remaining 45% aged 36+ years. 107 respondents were HD positive, 32 gene-negative, and 91 were gene-unknown. The most frequently sought information was about research updates (n=243), personal stories (n=167), HD related medical information (n=157), and mental health support (n=141). Social media was amongst the most frequently endorsed medium to access this information (n=207), alongside HD association websites (n=227), and HDBuzz (n=142). For HDYO specific resources, respondents frequently endorsed HDYO website (n=123), followed by social media (n=87), virtual (n=74), and in-person events (n=54). Conclusion Results of this survey will directly inform resources provided by HDYO and are relevant to HD associations supporting this community.
Institution: Monash University
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402373735