Collaborative Partnerships for Community-Driven Webinar Development and Delivery to Advance Translational Impact

INTRODUCTION: The UC Davis CTSC's CCE program partnered with the MIND Institute and 22q Family Foundation to create a Facebook webinar series that addresses families' needs for information about older children with chromosome 22q11.2 deletion syndrome(22qDS), shares research & resources, and foster inclusive Q&A. METHODS: Drawing insights from a parent focus group, the planning group met over a 5-month period to jointly determine the format of the event, platform, occurrence, day, time, and marketing management. The format of the event was webinars over Zoom which were streamed on Facebook. Each webinar featured two speakers, one from the UC Davis MIND and one from 22q Family Foundation. Scheduling considerations included the parent focus group responses, academic breaks, and holidays; session titles were Working with Schools, Building Futures, and Adulting with 22q. The planning sessions transitioned to one monthly meeting to debrief on the outcomes of the previous webinar and to coordinate the speakers. RESULTS: Focus groups revealed parents prefer quarterly webinars over all-day, in-person events due to caregiving demands. They stressed that children who have 22qDS have a variety of needs and parents or caregivers, often do not have time or do not feel comfortable leaving their child in the care of someone else. If they attended an event in which childcare was provided, they would not be fully emerged in the experience as they would be constantly worried if their child was having their needs met. Key topics of interest were IEP management; mental and behavioral health; therapies; transitions to adulthood; and new research specific to 22qDS. Attendance exceeded 200 per webinar. DISCUSSION: This collaborative approach delivered research findings directly to patients and families with lived experience, strengthened trust between researchers and the community, and ensured that educational content addressed real-world challenges faced during the transition to adulthood.