Recruitment barriers for underrepresented minorities to participate in Alzheimer’s disease clinical trials are well-documented.1,2 The authors of a recently published paper outline ways to remove these barriers.3

“Many of the papers focus on certain demographics. We wanted to be a little broader, though we were not fully able to capture every marginalized or minoritized group,” says Jonathan Jackson, PhD, executive director of the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital.

Jackson and colleagues wanted to place more emphasis on barriers researchers can modify easily. “Instead of focusing on elements of healthcare access or trust, which are often beyond the control — and budget — of Alzheimer’s research teams, we wanted our colleagues to know that they have a number of barriers they can [remove] to make it easier for underrepresented populations to take part,” Jackson shares. Looking closely at eligibility criteria is a crucial step. “This is where we often see the highest rates of rejection for minoritized populations,” Jackson reports.

Jackson says study teams and IRBs must scrutinize whether the criteria are necessary. For example, some protocols exclude anyone with “any history of head injury.”

“There’s a need to balance the risks of inclusion with the risks of exclusion to clinical research. Minoritized populations are suffering from the latter through an overzealous approach to the former, with no end in sight,” Jackson laments.

For both IRBs and research teams, the best way to ensure a diverse and representative sample in Alzheimer’s disease clinical trials is to “examine every aspect of a study design for flexibility,” Jackson offers.

Jackson says IRBs and investigators should be asking what can be consolidated, made simpler, or translated? What data can be collected outside your research setting? How can we communicate better with prospective and current research participants?

Research teams and ethics reviewers should “consider individuals in context,” Jackson suggests. Participants must be recruited, compensated, and retained to Alzheimer’s research studies alongside their caregivers, families, communities, and neighborhoods. “We as researchers need to widen out, thinking about systems of access and support in research, rather than individuals in isolation,” Jackson adds.

REFERENCES

  1. Gilmore-Bykovskyi AL, Jin Y, Gleason C, et al. Recruitment and retention of underrepresented populations in Alzheimer’s disease research: A systematic review. Alzheimers Dement (N Y) 2019;5:751-770.
  2. Denny A, Streitz M, Stock K, et al. Perspective on the “African American participation in Alzheimer disease research: Effective strategies” workshop, 2018. Alzheimers Dement 2020;16:1734-1744.
  3. Indorewalla KK, O’Connor MK, Budson AE, et al. Modifiable barriers for recruitment and retention of older adults participants from underrepresented minorities in Alzheimer’s disease research. J Alzheimers Dis 2021;80:927-940.