Leveraging the national infrastructure of trusted organizations to increase representation of Latinos in dementia research

Abstract The underrepresentation of Latinos in dementia research is a public health issue because Latinos are one and a half times as likely to have Alzheimer's disease than Whites, yet less then 1% of study participants in clinical trials on dementia are Latino. This underrepresentation reduces the generalizability of findings and hinders the

understanding of the mechanisms of dementia, further widening health disparities. Specific efforts to recruit Latinos in dementia research have leveraged community engagement strategies involving partnerships between researchers and community-based organizations (CBOs). The involvement of trusted CBOs was

critical to foster trust in researchers. However, community engagement strategies take a long time to develop and are limited to specific geographic areas (e.g., cities). A missed opportunity is the fact that many trusted CBOs have national reach. Partnering with trusted CBOs that have national reach could potentially provide the

infrastructure needed to rapidly implement scalable recruitment strategies nationwide. To leverage the infrastructures of trusted CBOs, we propose to establish a consortium driven by Latino stakeholders and involving national-reach CBOs that are trusted within Latino communities. In preliminary studies we already

identified the National Association of Hispanic Nurses (NAHN) and the Alzheimer's Association (ALZ) as relevant CBOs with national reach, that are well-trusted in Latino communities. In this new paradigm, the synergistic endorsements of the NAHN and ALZ will foster Latinos' trust and participation in studies supported

by the consortium. We aim to establish a Consortium in 4 sites of a multi-site NIA-funded clinical trial drawing upon the expertise of our multidisciplinary research team, which includes collaborators from the NAHN and the ALZ, a Latino messaging designer and a Latino organizational consultant, plus researchers with expertise in

implementation science and community engagement strategies for recruitment in Latino communities. We will use the Collective Impact conceptual model and the Ford et al. recruitment framework to guide our work. Our research has 3 specific aims: 1) Finalize facilitators and barriers to establishing the recruitment consortium, 2)

Build and finalize the resources of the recruitment consortium and 3) Establish and evaluate the Consortium recruitment intervention in a large clinical trial. The proposed project will help accelerate needed participation of Latinos in dementia research. Its approach can be replicated in other sites nationwide and adapted to

accelerate recruitment of other racial/ethnic minorities and other underrepresented groups into dementia research and in other domains.