THE WRAP-AROUND APPROACH: A NOVEL RENTENTION STRATEGY IN THE AA-FAIM STUDY

Abstract

The success of longitudinal studies is greatly dependent on effective retention. Retaining participants from underrepresented groups is a growing concern for many studies, including the recently-funded African Americans Fighting Alzheimer's in Midlife (AA-FAIM). For this project, we describe a novel retention strategy used in AA-FAIM, the RCC Linkage model in which we attempt to optimize benefits and minimize negative consequences with the addition of a “Wrap Around” visit. The Wrap Around approach, is a post-research visit during which study personnel discuss with the participant any modifiable risk factors identified during the research visit. A team, consisting of a nurse practitioner or physician, neuropsychologist, clinical psychology postdoctoral fellows and study coordinators review data gathered from participants. Based on the team's review, a personalized feedback summary is created. Research participants obtain health related information and referrals, building a reciprocally beneficial, long-term relationship with the study team. AA-FAIM Participants include middle-aged African American participants; age 45 to 64 years old enrolled in two ongoing studies (Wisconsin Registry for Alzheimer's Prevention and the Wisconsin Alzheimer's Disease Research Center). Between the two studies, we will pool existing cross-sectional data from 250 African Americans, and then double the size of the cohorts over a 5-year period. We will conduct a cross-sectional and longitudinal analysis of data collected from two the African American Cohorts. Data include cognitive, mood, psychological, medical, neuroimaging, and CSF data. Pooling new and previously collected data from existing cohorts will result in a dataset including cross-sectional data from 500 African Americans. We anticipate the Wrap Around visit will improve our retention of African Americans participants in both parent studies. In the AA-FAIM, we propose to create a dataset directed toward examining the relationship of disease risk factors [cardiovascular disease (CVD), psychological factors, and neighborhood disadvantage], with markers of preclinical AD in middle-aged African Americans. Efforts to examine preclinical Alzheimer's disease have expanded but few cohort studies have focused exclusively on identifying preclinical Alzheimer's Disease risk factors in African Americans. This Wrap Around Approach will be crucial to gathering longitudinal data while giving back and keeping participants engaged.