Modifiable Barriers for Recruitment and Retention of Older Adults Participants from Underrepresented Minorities in Alzheimer’s Disease Research

Khushnoo K. Indorewalla; Maureen K. O’Connor; Andrew E. Budson; Christina Guess (DiTerlizzi); Jonathan Jackson

doi:10.3233/jad-201081

journal article Open Access Feb 17, 2021

Modifiable Barriers for Recruitment and Retention of Older Adults Participants from Underrepresented Minorities in Alzheimer’s Disease Research

Khushnoo K. Indorewalla Maureen K. O’Connor Andrew E. Budson Christina Guess (DiTerlizzi) Jonathan Jackson

Journal of Alzheimer’s Disease Vol. 80 No. 3 pp. 927-940 · SAGE Publications

View at Publisher Save 10.3233/jad-201081

Abstract

Clinical Alzheimer’s disease (AD) trials currently face a critical shortfall of thousands of eligible participants, which inflates the duration and cost of the clinical study as well as threatens the scientific merit of promising clinical interventions. This recruitment crisis is further compounded by the fact that underrepresented and marginalized populations—particularly those identifying as a racial or ethnic minority, those with low socioeconomic status, or living in rural areas—have been historically underrepresented in ongoing AD clinical trials despite overwhelming evidence that such populations are at increased risk for developing dementia. As a result of various recruitment barriers, current AD clinical studies frequently reflect a decreasingly representative segment of the US population, which threatens the overall generalizability of these findings. The current narrative review provides an updated examination and critique of common recruitment barriers and potential solutions, as well as a discussion of theoretical approaches that may address barriers disproportionately experienced by underrepresented communities. AD clinical researchers are encouraged to take purposive action aimed at increasing diversity of enrolled AD clinical trial cohorts by actively identifying and quantifying barriers to research participation—especially recruitment barriers and health disparities that disproportionately prevent underrepresented and marginalized populations from participating in research. Furthermore, researchers are encouraged to closely track which individuals who express interest in AD research ultimately enroll in research studies to examine whether AD research participation is appropriately representative of the intended population for whom these new and novel AD interventions are being designed.

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Details

Published: Feb 17, 2021
Vol/Issue: 80(3)
Pages: 927-940
License: View

Authors

K

Khushnoo K. Indorewalla

Edith Nourse Rogers Memorial Veterans Hospital, Bedford, MA, USA

M

Maureen K. O’Connor

Edith Nourse Rogers Memorial Veterans Hospital, Bedford, MA, USA; Boston University Alzheimer’s Disease Research Center, Department of Neurology, Boston University School of Medicine, Boston, MA, USA

A

Andrew E. Budson

Boston University Alzheimer’s Disease Research Center, Department of Neurology, Boston University School of Medicine, Boston, MA, USA; VA Boston Healthcare System, Boston, MA, USA

C

Christina Guess (DiTerlizzi)

Boston University Alzheimer’s Disease Research Center, Department of Neurology, Boston University School of Medicine, Boston, MA, USA

J

Jonathan Jackson

Boston University Alzheimer’s Disease Research Center, Department of Neurology, Boston University School of Medicine, Boston, MA, USA; CARE Research Center, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

Cite This Article

Khushnoo K. Indorewalla, Maureen K. O’Connor, Andrew E. Budson, et al. (2021). Modifiable Barriers for Recruitment and Retention of Older Adults Participants from Underrepresented Minorities in Alzheimer’s Disease Research. Journal of Alzheimer’s Disease, 80(3), 927-940. https://doi.org/10.3233/jad-201081

Modifiable Barriers for Recruitment and Retention of Older Adults Participants from Underrepresented Minorities in Alzheimer’s Disease Research

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