Perceptions of Research Burden and Retention Among Participants in ADRC Cohorts.

ABSTRACT:

Objectives

Alzheimer disease (AD) and related dementias clinical research is associated with significant participant burden. The Perceived Research Burden Assessment (PeRBA) measures participants' perceptions of logistical, psychological, and physical burdens. The purpose of this study was to assess PeRBA's psychometric properties, perceptual sources, and behavioral consequences with participants in a multisite study of participant retention in longitudinal cohort studies of Alzheimer disease and related dementias.

Design

Multicenter mixed methods.

Setting

In-person or phone.

Participants

A total of 443 participants at 4 NIA-funded Alzheimer Disease Research Centers (ADRCs) were randomly selected and invited to participate if they were 45 years of age or more,

SUBMITTER: Gabel M 

PROVIDER: S-EPMC9712497 | biostudies-literature | 2022 Oct-Dec 01

REPOSITORIES: biostudies-literature