P-89: Type 1 diabetes TrialNet community partner engagement program (CPEP): design and early impact
C A March, K Cameron, L A Dimeglio, J Gaglia, R Goland, M Haller, L Jacobsen, J L Sherr, D K Wherett, K Herold, I LibmanAbstract
Introduction
Engaging community partners in research design and implementation is increasingly recommended. Data describing engagement in a type 1 diabetes (T1D) research consortium and its impact are limited.
Objectives
To characterize the development and early impact of CPEP, launched in 2025, for TrialNet, a multi-center network focused on T1D prevention.
Methods
CPEP recruited a community advisory board (CAB) via nominations from 18 centers in the US/Canada. CAB members had lived experience as a person/parent with stage 1-3 T1D and had participated in TrialNet (screening, monitoring, and/or clinical trials). Orientation included research ethics, expectations, and confidentiality. Activities included quarterly CAB meetings for large/small group discussion and options to join longitudinal protocol committees or attend steering committee meetings. Activities were virtual and compensated. CAB members’ experiences were assessed using a validated, semi-annual survey (PPEET).
Results
20 of 23 individuals recruited joined at least 1 meeting. CAB members (80% female, 30% identifying as a minority) had a personal/family history of stage 1-2 (60%) and/or stage 3 (75%) T1D. Quarterly meeting attendance averaged 15 members; 9 engaged in protocol committees and 6 in the steering committee. CAB members contributed to protocol and operational decisions, including: (1) reviewing prevention trial designs, (2) informing trial inclusion criteria, (3) augmenting recruitment materials and strategies, (4) altering participant survey items, and (5) recommending new approaches to incentivize participation. Year 1 survey responses indicated high overall satisfaction (Table). Comments highlighted co-learning, diversity, and respect.
Conclusions
Research consortium engagement is feasible and facilitates immediate and actionable feedback to investigators. Future work will measure impact on study efficiency, recruitment, and retention.