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While providing compensation for participation in research studies is common, there is an ongoing debate surrounding compensation models and how they can be equitably applied. This work attempts to better understand the landscape of research compensation by evaluating factors associated with compensation of research study participants across instiutional review board (IRB)-approved studies at a single academic institution in California.
Methods:
We extracted all IRB applications for social, behavioral, educational, and public policy research studies between January 1, 2019, and December 31, 2021, at the University of California, San Francisco. Compensation amounts, time estimates for participation, and location of study activities (hybrid, remote, in-person) were extracted from free text entries in the IRB application and reorganized into discrete variables. Multivariable logistic regression was used to assess factors associated with receiving payment after adjusting for time.
Results:
We analyzed 403 unique IRB applications. Studies held at public hospitals and clinics were more likely to provide compensation to study participants, whereas studies held at the university hospitals and clinics were less likely to provide compensation. Unfunded studies also were less likely to provide compensation to research study participants. While participants that were classified as “economically/educationally disadvantaged” and “unable to read, speak, or understand English” within the institution’s IRB application were more likely to receive compensation, those that had “diminished capacity to consent” were less likely to receive compensation.
Conclusions:
While there are multiple frameworks for compensation, there is still significant variability in compensation strategies. Institutions should center equity in considering standardized approaches to compensation for research participation.
Registries play an important role of identifying large groups of individuals who may be eligible for clinical trials. Major advantages include scalability, ability to reach many individuals with few resources, and to connect with individuals who may not otherwise engage in research. Major challenges include generalizability, data integrity, data validity, and study drop-out. This chapter reviews the four largest online registries in the USA: the Brain Health Registry, the Alzheimer’s Prevention Registry and GeneMatch, Cleveland Clinic’s HealthyBrains, and Alzheimer’s Association TrialMatch. Participant engagement strategies and current demographics are summarized. We also discuss a newly established program to create Trial-ready Cohort for Preclinical and Prodromal AD (TRC-PAD) with the aim to accelerate clinical trial enrollment. It is important to build a large cohort, to identify enough participants eligible and interested in clinical trials. Compatibility with smartphones, and further study of engagement and retention strategies with a focus on under-represented groups are critical to achieve our ultimate goal of trial participants representing the full US population.
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