@article{04a9e89314874878a1f9b1f9837c89bd,
title = "Retention of Alzheimer Disease Research Participants",
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.",
keywords = "attrition, dropout, missing, missingness, retention",
author = "Grill, {Joshua D.} and Jimmy Kwon and Teylan, {Merilee A.} and Aimee Pierce and Vidoni, {Eric D.} and Burns, {Jeffrey M.} and Allison Lindauer and Joseph Quinn and Jeff Kaye and Gillen, {Daniel L.} and Bin Nan",
note = "Funding Information: 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. Funding Information: 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 Wis-niewski, MD), P30 AG013854 (PI Robert Vassar, PhD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Ben-nett, 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). Funding Information: The AD Research Center (ADRC) system is a network of academic centers funded by the National Institute on Aging to perform longitudinal research across the spectrum of ADRD. This includes collecting protocol-derived clinical and neuropsychological assessments.12,13 A critical aspect of this research enterprise is to retain participants longitudinally, ideally across clinical diagnostic transitions and even to death.14 Publisher Copyright: {\textcopyright} 2019 Wolters Kluwer Health, Inc. All rights reserved.",
year = "2019",
doi = "10.1097/WAD.0000000000000353",
language = "English (US)",
volume = "33",
pages = "299--306",
journal = "Alzheimer Disease and Associated Disorders",
issn = "0893-0341",
publisher = "Lippincott Williams and Wilkins",
number = "4",
}