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Encouraging older adults to participate in research

Nina Silverberg
Nina SILVERBERG,
Chief, Alzheimers Disease Centers,
Division of Neuroscience (DN)
.

Do you struggle to recruit older participants into your research? Researchers tell us that recruiting older adults—especially from underrepresented groups—is challenging, while the need for participants is great.

A survey by Research!America indicates that many older adults would be willing to participate in medical research if they were aware of studies or invited to participate, particularly by a trusted primary care provider. We recently had the chance to address the opportunities and obstacles investigators face in recruitment in a piece in the Health Affairs special issue on Alzheimer’s disease.  Some strategies for increasing participation we discussed include:

  • Bridging the gap between research and clinical care
  • Connecting participant registries
  • Accommodating participant/caregiver needs
  • Raising awareness and building trust with communities

The key to all these strategies of course is connecting participants, health care providers, and researchers at the local level.

So, here’s what we are doing at the federal level to support local efforts:

Three federal agencies—NIA, the Administration for Community Living (ACL) and the Centers for Disease Control and Prevention (CDC)—have teamed up to encourage older adults to participate in clinical research. The project, dubbed “ROAR—Recruiting Older Adults into Research,” aims to work through local aging services and public health networks to increase awareness among diverse older adults of the value of participating in research and to include older participants in all types of research. We are starting with a focus on Alzheimer’s disease research, but hope to broaden the message to include all kinds of research over time.

So far, with input on successful messages and strategies from a variety of stakeholders, we are developing materials, focusing on healthy aging and research participation, with the message that “You CAN make a difference for yourself and future generations.”

The materials will be encouraging older adults to start with an easy action step: signing up with a research matching service or registry. The ROAR project is working with ResearchMatch, an NIH-funded service that matches interested people with studies they may qualify for, and offering links to two large-scale, Alzheimer’s-specific registries, the Alzheimer’s Prevention Registry and the Alzheimer’s Association’s TrialMatch, in this first phase.

Right now, the team is reaching out to ACL’s aging network staff, CDC’s public health staff, and NIA-funded Alzheimer’s Disease Centers staff in select locations to work with us trying out the materials. Once we receive and incorporate feedback, we will begin to finalize the materials for wider use. When they become available, we hope you will try them out, give us your feedback, and let us know what else would be helpful, particularly to reach underrepresented communities.

What else is needed?

So, how can we further support your efforts to recruit older adults into research? What ideas and innovations can you add to the mix?

 

Read Next:

ROAR! HHS agencies seek to recruit older adults into research

Alzheimer's Disease Diversity Scientific Resources

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