Alzheimer's Disease Research Center Supplement for VA Collaboration

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This is a request for supplemental funds to the Mount Sinai Alzheimer’s Disease Research Center (MSADRC), PI: Mary Sano, PhD, (P30 AG066514) to pilot novel approaches for effective and sustainable strategies to increase the recruitment and retention of veterans into clinical research studies of Alzheimer’s disease and Alzheimer's disease related dementias (AD/ADRD). This supplemental application enhances several aims of the recently funded ADRC. Building on years of experience with co-location of the MSADRC at the James J Peters VAMC in the Bronx, this supplement proposes to extend outreach and recruitment to cognitively healthy veterans and those with early or subtle cognitive impairment to engage them in research around dementia prevention and early detection of disease. These individuals are most often seen in primary care by the Patient Aligned Care Team (PACT). To target these individuals we propose to use the Bronx Regional Health Information Organization (RHIO), a New York State certified health information exchange, to identify those who are seen at other health facilities in the region. This resource, in combination with the data analytic team at the JJPVAMC, has currently identified over 2700 individuals who may be available to approach for research participation. With the support of primary care we will conduct outreach activities to this cohort in conjunction with their visits with the VA PACT, and invite them to register interest in clinical research in AD/ADRD. We will create a Research Coordination (RC) Team that will use the expertise of the JJP VA Geriatric Research, Education and Clinical Center (GRECC) to create alliances with patients, caregivers and providers. A Veteran and Caregiver Research Advisory Council will be assembled through the GRECC to assist with the development and evaluation of outreach, engagement and educational materials that have been developed by the Outreach and Engagement (ORE) core of the ADRC. The council will provide input for constructing messages to raise awareness of cognitive health and dementia prevention in the veteran community and will suggest topics for lectures and workshops that are relevant to concerns of VA patients and their caregivers. Participants who join the registry will be invited to participate in studies such as natural history and biomarker studies including into the MSADRC clinical Core, clinical trials, survey studies and educational opportunities that will be offered by the MSADRC Outreach Core. The RC team will track registry participants to determine the profile of successfully enrolled subjects and rates of recruitment into specific types of trials. Details such as the number of veterans contacted, referred, screened, successfully enrolled and retained in to AD/ADRD research will be tracked and the data will be used to evaluate and modify outreach efforts to maximize veteran engagement in research. As outcomes, we expect this work to improve recruitment into AD/ADRD related trials with a specific focus on biomarker studies for early disease stage and disease prevention efforts, and to create a roadmap that will permit the success to be reproduced in other centers.