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Retention of Alzheimer Disease Research Participants

Grill, Joshua D. PhD*,†,‡,§; Kwon, Jimmy MSc; Teylan, Merilee A. MPH; Pierce, Aimee MD#; Vidoni, Eric D. PhD**; Burns, Jeffrey M. MD**; Lindauer, Allison NP, PhD#; Quinn, Joseph MD#; Kaye, Jeff MD#; Gillen, Daniel L. PhD*,∥; Nan, Bin PhD*,∥

Alzheimer Disease & Associated Disorders: October–December 2019 - Volume 33 - Issue 4 - p 299–306
doi: 10.1097/WAD.0000000000000353
Original Articles

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.

*Institute for Memory Impairments and Neurological Disorders

Institute for Clinical and Translational Science

Departments of Psychiatry and Human Behavior

§Neurobiology and Behavior

Statistics, University of California, Irvine, Irvine, CA

National Alzheimer’s Coordinating Center, University of Washington, Seattle, WA

#Layton Center on Aging and Alzheimer’s Disease, Oregon Health & Science University, Portland, OR

**University of Kansas Alzheimer’s Disease Center, Fairway, KS

The NACC database is funded by NIA/NIH Grant U01 AG016976. NACC data are contributed by the NIA-funded ADCs: P30 AG019610 (PI Eric Reiman, MD), P30 AG013846 (PI Neil Kowall, MD), P50 AG008702 (PI Scott Small, MD), P50 AG025688 (PI Allan Levey, MD, PhD), P50 AG047266 (PI Todd Golde, MD, PhD), P30 AG010133 (PI Andrew Saykin, PsyD), P50 AG005146 (PI Marilyn Albert, PhD), P50 AG005134 (PI Bradley Hyman, MD, PhD), P50 AG016574 (PI Ronald Petersen, MD, PhD), P50 AG005138 (PI Mary Sano, PhD), P30 AG008051 (PI Thomas Wisniewski, MD), P30 AG013854 (PI Robert Vassar, PhD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Bennett, MD), P50 AG047366 (PI Victor Henderson, MD, MS), P30 AG010129 (PI Charles DeCarli, MD), P50 AG016573 (PI Frank LaFerla, PhD), P50 AG005131 (PI James Brewer, MD, PhD), P50 AG023501 (PI Bruce Miller, MD), P30 AG035982 (PI Russell Swerdlow, MD), P30 AG028383 (PI Linda Van Eldik, PhD), P30 AG053760 (PI Henry Paulson, MD, PhD), P30 AG010124 (PI John Trojanowski, MD, PhD), P50 AG005133 (PI Oscar Lopez, MD), P50 AG005142 (PI Helena Chui, MD), P30 AG012300 (PI Roger Rosenberg, MD), P30 AG049638 (PI Suzanne Craft, PhD), P50 AG005136 (PI Thomas Grabowski, MD), P50 AG033514 (PI Sanjay Asthana, MD, FRCP), P50 AG005681 (PI John Morris, MD), P50 AG047270 (PI Stephen Strittmatter, MD, PhD).

J.D.G., D.L.G., and B.N. were supported by NIA AG016573, 1R21AG056931, and AG059407. J.D.G. is currently supported by UL1 TR000153.

The authors declare no conflicts of interest.

Reprints: Joshua D. Grill, PhD, 3204 Biological Sciences III, University of California, Irvine, Irvine, CA 92697-4545 (e-mail:

Received June 26, 2019

Accepted August 18, 2019

Online date: September 26, 2019

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