Core E: Outreach, Recruitment and Engagement Core

Inability to efficiently recruit sufficient numbers of participants in observational studies and clinical trials slows progress in understanding Alzheimer’s disease (AD) and developing effective treatments. This problem is particularly acute in historically underrepresented groups leading to a lack of diversity and inclusiveness in research that may mask disease heterogeneity (both clinical and neuropathological), limit generalizability of results, and inhibit the development of treatments that are effective, safe, and available for all people. The goals of the Shiley-Marcos Alzheimer’s Disease Research Center (ADRC) Outreach, Recruitment and Engagement (ORE) Core are to meet the recruitment needs of the ADRC and affiliated studies through broad community outreach that provides education about AD and related disorders (ADRD) and presents opportunities for participation in research, with a particular focus on the large, underserved Latino population in our region. The ORE Core also strives to maintain engagement with those participating in ADRD research to maximize retention. To achieve these goals, the ORE Core will 1) develop and implement sustainable strategies for recruitment of research participants and study partners, ensuring participation from underrepresented groups and those with reduced healthcare access; 2) provide outreach to educate community members, community organizations, and local healthcare professionals about ADRD, the importance of ADRD research, and resources provided by the ADRC; 3) implement methods to engage current and potential ADRC participants (e.g., identify factors that might increase acceptability of ADRD research procedures such as autopsy), and to engage students at all levels of education to support the next generation of individuals working in neuroscience-related careers, and 4) track the success of recruitment, outreach and engagement activities using defined metrics and recruitment science procedures to assess the relative value of various strategies. Methods will build upon our prior success in recruiting and retaining diverse participants in the ADRC longitudinal study and volunteer registry through community-based memory screening, partnerships with neurology clinics (including those with a large underrepresented patient base), lay and professional educational activities, quality-of-life programs (e.g., support groups), and timely dissemination of information on ADRD research, treatment advances and ADRC resources via our website, newsletters, and social media. With input from key community partners, these efforts will occur in a manner that is culturally sensitive and appropriate for individuals from diverse groups who may have low literacy or English as a second language.