K017 Importance and impact of global and inclusive perspectives in research

<h3>Background</h3> In 2021, the European Huntington Association, Huntington’s Disease Youth Organization and the International Huntington Association joined a formal partnership called HD Community Advisory Board (HD-CAB) to bring an inclusive representation of the HD community together to provide insights and perspectives to the research community. HD-CAB Mission: The main mission of this initiative is to represent the voice of the global HD community and provide HD community experience to regulators, industry, researchers and governing bodies. HD-CAB leadership also invests in the advocates through educational presentations to help them better understand the happenings in HD research. Sessions include regulatory procedures, introduction into clinical trials, breakdown of clinical trials, patient engagement and first-hand experiences from advocates. The Reason HD-CAB Was Created: This ad board was created to address some deficiencies in general advocacy: 1) Ad boards are often convened with a limited demographic of the community, mostly what pharmaceutical companies are currently seeking for their immediate recruitment needs. 2) Presymptomatic or prodromal community members’ opinions have not had the same weight as those who have been officially diagnosed with symptoms. 3) Ad boards have focused on people who know their genetic status and can ignore the importance of young people in general. 4) The global community, outside of North America, does not always have the opportunity to share their perspectives with industry partners. <h3>Methodology</h3> HD-CAB facilitated a survey of participants after two years since inception to understand how participating in HD-CAB has enhanced their education, social needs and influenced any decision-making when it comes to research questions.