Engagement of understudied populations as community change: The South Texas ADRC model

Many populations experiencing the highest burdens of Alzheimer's disease and related dementias remain understudied, in part because traditional recruitment and retention models are insufficient to support sustained engagement. The Outreach, Recruitment, and Engagement Core (OREC) of the South Texas Alzheimer's Disease Research Center reconceptualized participant recruitment as a long-term system change in a Hispanic-majority, urban–rural region. OREC institutionalizes shared power through community advisory governance, aligns research protocols with local lived realities (through patient navigators, community health workers/promotores, and decentralized access points), and employs a data-driven feedback loop for continuous improvement. In 1 year, 46 outreach events touched 10,134 individuals (71% Hispanic) and generated 172 new registry enrollments. Qualitative engagement (focus groups/key-informant interviews) progressed to high-sensitivity topics (e.g., brain donation), signaling maturation of trust. This shift from outreach to reciprocity infrastructure reflects a systems-level change, one that lowers barriers, builds trust, and enables research participation to become routine rather than exceptional.