Core E: Outreach and Recruitment Core

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PROJECT SUMMARY – OUTREACH AND RECRUITMENT CORE The structure of the Northwestern ADC is designed to maximize the impact of the Outreach and Recruitment (OR) Core. The OR Core is configured to synergistically work with the other cores of the Northwestern ADC in ways that serve the national mandates of diversity recruitment, outreach, and retention at the same time that it promotes the central theme of the ADC on the heterogeneity of aging and dementia. Over the next 5 years, this mission will be pursued through the following three Specific Aims: 1) Optimize the recruitment of subjects into the Clinical Core and their retention through novel non-pharmacological interventions; 2) Provide outreach and educational programs for the recruitment of underrepresented groups to the Northwestern ADC; and 3) Initiate and coordinate public education programs in conjunction with city, state and national entities. The OR Core will pursue this mission through the establishment of collaborative local community partnerships, recognition and support for the psychosocial needs of Clinical Core patients and families, and the design and evaluation of innovative programs that support patients’ and families’ strength and resilience. This work will be accomplished through the following mechanisms: 1) The development of outreach, engagement and recruitment programs directed to underrepresented groups utilizing community engaged research philosophy; 2) Close collaboration with the Clinical Core to recruit subjects that fit research priorities via monthly operational meetings; 2) Targeted recruitment of cognitively healthy volunteers as control subjects and for clinical trials using a community engaged research approach; 3) Focused retention of Clinical Core subjects through evidence-based quality of life enrichment and non-pharmacological interventions; 4) Introduction of technology to increase access of non-pharmacological and life enrichment interventions to research participants outside of the local geographic area; 5) Retention of later stage patients and families no longer able to come into the ADC by providing ‘phone call only’ follow-up; 6) Contribution of leadership in city and state initiatives that promote NAPA priorities such as the Dementia Capable State and Alzheimer’s Disease State Plan; and 7) Collaborations that promote educational programs for families and the general community with a special emphasis on healthy brain aging and young-onset, non-amnestic dementias such as primary progressive aphasia (PPA) and behavioral variant frontotemporal dementia (bvFTD). During the next 5-year cycle, the OR Core will continue activities that have proven their value for outreach, recruitment, retention and life-enrichment while also introducing innovative modifications addressing national and local priorities.