F007 The Juvenile-onset initiative for Huntington’s disease (JOIN-HD): launching stage 2

<h3>Background</h3> The clinical and biological manifestations of Juvenile Huntington’s Disease (JHD) – which accounts for approximately 5% of HD cases and manifests before the age of 21 – remains inadequately understood, presenting distinct challenges for affected individuals, caregivers, and healthcare practitioners. <h3>Aims</h3> The primary objective of JOIN-HD is to build a global infrastructure enabling interrogation of the natural history of JHD, via remote assessment of medical and family histories, surveys, and symptom tracking to advance understanding and management strategies for JHD. <h3>Methods</h3> JOIN-HD is a prospective registry and observational study conducted in multiple languages, recruiting globally with the support of patient advocacy groups and in partnership with HD professionals. Participants will complete annual surveys and track symptoms remotely. The study includes participants of all ethnicities and races, with no predefined sample size. Individuals over 18 can self-enrol, while those under 18 require parental consent. Study procedures, including assessments and data collection, will be conducted remotely using the Across Healthcare Matrix portal. <h3>Outcome</h3> The first stage of JOIN-HD was established in 2021 and now hosts 100+ pre-registered participants. JOIN-HD Stage 2 launches in Q4 and will capture clinical and family histories, medications, and diagnostic journeys in a new purpose-built electronic data capture portal. <h3>Conclusions</h3> By aggregating comprehensive data, the registry aims to guide patient-centric research initiatives, enhancing understanding and management of JHD. Through a user-friendly enrolment process and remote assessments, JOIN-HD endeavours to recruit a diverse participant pool globally, maximising the numbers that could be recruited through in-person methods alone.