Open Mic for managers of registries/biorepositories to discuss challenges

This facilitated open mic invites managers of registries and biorepositories to surface persistent operational, technical, and governance challenges, share practical solutions, and discuss actionable next steps for improving quality, sustainability, and participant trust. We encourage attendees to bring real challenges — from consent and governance dilemmas to sample/data interoperability, QC, and long‑term program sustainability — for short, focused peer problem‑solving and experience sharing.

Discussion Questions:

• Sustainability & Funding: What revenue models or funding strategies have worked (or failed) for sustaining your registry or biorepository beyond the initial grant/funding period?
• Governance & Trust: What governance structures (e.g., data access committees, steering committees, patient advisory boards) have proven most effective at maintaining accountability and participant trust over time? For those who have involved patients or community advisors directly in governance, how has that shaped your operations?
• Retention: What strategies have you used to maintain participant engagement and reduce attrition in longitudinal registries?
• AI Integration: Is anyone exploring AI-assisted tools for data cleaning, participant matching, or outcome prediction — and what are the practical and ethical considerations you’ve encountered?
• Data Interoperability: What has been your experience mapping your registry data to common data elements (CDEs) or standard terminologies like SNOMED-CT, LOINC, or ICD codes — and where do gaps or inconsistencies still cause problems?