Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
Engagement of understudied populations as community change: The South Texas ADRC model.
СтатьяНазвание и аннотация: Перевод пока не подготовлен
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Maestre Gladys E, Patel Neela K, Pirela Rosa V, Hilsabeck Robin C, Stine Kendra, Epps Fayron R, Garcia Neyra, Santiago-Mejias Stephanie, Reyes Roberto, Satizabal Claudia L, Mejia-Arango Silvia, Sullivan A Campbell, Oropeza Omar, Gireud-Goss Monica, Rodriguez Hector, Trevino Hector, Ramirez Andrea, Young Vanessa M, Alliey-Rodriguez Ney, LaRoche Ashley, Martinez-Menendez Carlos J, Tanner Jeremy A, Otto Leah, Garza-Parker Cynthia De La, Garza Noe, Flores Melissa, Casas Norene, Robles Sylvia, Davila Angelica, Maestre Cristian A, Shipp Eric, Melgarejo Jesus D, de Erausquin Gabriel A, Williams-Blangero Sarah, Seshadri Sudha
Аннотация
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.