Outreach, Recruitment, and Engagement Core

Northwestern University At Chicago, Evanston IL

Investigators

Linked publications & trials

Abstract

PROJECT SUMMARY - OUTREACH AND RECRUITMENT CORE The Outreach, Recruitment and Engagement (ORE) Core will contribute to the goals of the Northwestern ADRC with a focus on the theme of Heterogeneity in Aging and Dementia. The ORE Core will achieve its aims by leveraging the independently funded components of the Mesulam Center: the Neurobehavior Clinic, Clinical Trials and Observational Consortia, and Miller Family Life Enrichment & Non-Pharmacologic Intervention Programs. The ORE Core will focus outreach, community engagement and recruitment on Mesulam Center research priorities, i.e., primary progressive aphasia (PPA), behavioral variant frontotemporal dementia (bvFTD), mild cognitive impairment (MCI), healthy adults without cognitive impairment (“normal controls” and SuperAging), and Mid-life Onset Alzheimer’s Disease (MOAD), with a focus on recruiting underrepresented groups. The ORE Core will promote NIA and NAPA mandates specifically through the following goals: 1) Optimize recruitment of participants according to ADRC research priorities into the Clinical Core and academic research studies through the Neurobehavior Clinic and targeted community engagement. 2) Provide outreach and community engagement strategies for the recruitment and retention of underrepresented groups to the Northwestern ADRC according to center research priorities. 3) Support the engagement of research participants and their families, particularly those who live at a distance, through novel and adaptable life enrichment programs and tailored non-pharmacological interventions, maintaining our center’s long-term commitment to our approach of “therapeutic encounters.” 4) Initiate and coordinate public education programs in conjunction with city, state and national entities. The ORE Core will pursue these goals through the provision of disease education, counseling and support for the psychosocial needs of ADRC patients and caregiving families, the design and evaluation of innovative programs that support both patients’ and caregiving families’ strength and resilience, and the engagement of collaborative local community partnerships for the purposes of research recruitment and retention. We will continue our work through outreach and engagement of underrepresented groups, the Clinical Core and other center research teams, retention via non-pharmacological interventions and incorporation of a psychosocial pathway, direct ‘phone call only’ follow-up for later stage participants for retention and commitment to brain donation, and maintaining a leadership role in local and national collaborations and educational programs that focus on the heterogeneity of disease, symptoms and needs for patient support and caregiver education and resources.