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. 2019 Oct-Dec;33(4):299-306.
doi: 10.1097/WAD.0000000000000353.

Retention of Alzheimer Disease Research Participants

Joshua D Grill  1   2   3   4 , Jimmy Kwon  5 , Merilee A Teylan  6 , Aimee Pierce  7 , Eric D Vidoni  8 , Jeffrey M Burns  8 , Allison Lindauer  7 , Joseph Quinn  7 , Jeff Kaye  7 , Daniel L Gillen  1   5 , Bin Nan  1   5
Affiliations

Retention of Alzheimer Disease Research Participants

Joshua D Grill et al. Alzheimer Dis Assoc Disord. 2019 Oct-Dec.

Abstract

Introduction: Participant retention is important to maintaining statistical power, minimizing bias, and preventing scientific error in Alzheimer disease and related dementias research.

Methods: We surveyed representative investigators from NIH-funded Alzheimer's Disease Research Centers (ADRC), querying their use of retention tactics across 12 strategies. We compared survey results to data from the National Alzheimer's Coordinating Center for each center. We used a generalized estimating equation with independent working covariance model and empirical standard errors to assess relationships between survey results and rates of retention, controlling for participant characteristics.

Results: Twenty-five (83%) responding ADRCs employed an average 42 (SD=7) retention tactics. In a multivariable model that accounted for participant characteristics, the number of retention tactics used by a center was associated with participant retention (odds ratio=1.68, 95% confidence interval: 1.42, 1.98; P<0.001 for the middle compared with the lowest tertile survey scores; odds ratio=1.59, 95% confidence interval: 1.30, 1.94; P<0.001 for the highest compared with the lowest tertile survey scores) at the first follow-up visit. Participant characteristics such as normal cognition diagnosis, older age, higher education, and Caucasian race were also associated with higher retention.

Conclusions: Retention in clinical research is more likely to be achieved by employing a variety of tactics.

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Figures

Figure 1.
Figure 1.
Relationship between retention strategies and retention rates. ADRC survey responses were used to calculate a total retention score (x-axis) and plotted vs. individual ADRC’s retention rates at F1 (y-axis). A positive correlation was observed, whereby retention rate increased 0.14% for every one unit increase on the survey score. RR=retention rate; TS=total retention survey score.
Figure 2.
Figure 2.
Forest plots of associations between retention scores and retention performance at F1, F2, and F3. The estimates for F2 and F3 (for each survey score tertile) are presented with estimated 95% CIs. All estimates are relative to the rates for the lowest survey score tertile.
See this image and copyright information in PMC

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