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

Authors

Gladys E Maestre, Neela K Patel, Rosa V Pirela, Robin C Hilsabeck, Kendra Stine, Fayron R Epps, Neyra Garcia, Stephanie Santiago-Mejias, Roberto Reyes, Claudia L Satizabal, Silvia Mejia-Arango, A Campbell Sullivan, Omar Oropeza, Monica Gireud-Goss, Hector Rodriguez, Hector Trevino, Andrea Ramirez, Vanessa M Young, Ney Alliey-Rodriguez, Ashley LaRoche, Carlos J Martinez-Menendez, Jeremy A Tanner, Leah Otto, Cynthia De La Garza-Parker, Noe Garza, Melissa Flores, Norene Casas, Sylvia Robles, Angelica Davila, Cristian A Maestre, Eric Shipp, Jesus D Melgarejo, Gabriel A de Erausquin, Sarah Williams-Blangero, Sudha Seshadri

Published in

Alzheimer's & dementia : the journal of the Alzheimer's Association. Volume 22. Issue 8. Pages e71695.

Abstract

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.

PMID:
42554237
Bibliographic data and abstract were imported from PubMed on 05 Aug 2026.

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