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ADORE website, videos are new tools for Alzheimer's research recruitment

Nina Silverberg
Nina SILVERBERG,
Director, Alzheimer's Disease Centers Program,
Division of Neuroscience (DN)
.

The recent strong funding support for Alzheimer’s science at NIA is a wonderful opportunity. But this exciting surge in clinical research brings with it a burgeoning demand for clinical research volunteers, and NIA is eager to assist investigators in achieving their recruitment goals. An estimated 270,000 participants are needed to meet the recruitment needs of nearly 200 Alzheimer’s and related dementias clinical trials and studies—and many more people will need to be screened to find eligible participants.

As an important step toward meeting that challenge, NIA is pleased to announce the debut of ADORE (Alzheimer's and Dementia Outreach, Recruitment, and Engagement Resources) a searchable, online toolbox designed to help researchers engage, recruit, and retain participants in clinical trials and studies for the prevention and treatment of Alzheimer’s disease and related dementias.

ADORE brings together hundreds of resources—including journal articles, toolkits, recruitment plans, and more—shared by NIA-supported Alzheimer’s Disease Research Centers (ADRCs) and other agencies and organizations. ADORE is browsable by multiple topics, including recruitment or engagement goals and participant characteristics or demographics.

You can search ADORE by resource category, keyword, or tag. ADORE currently hosts about 325 resources designed to:

  • Educate and raise awareness
  • Recruit and retain participants
  • Explain procedures and results
  • Manage research operations

Recruitment planning roadmap

As a starting point for your outreach and engagement efforts, check out our new Alzheimer’s Disease and Related Dementias Clinical Studies Recruitment Planning Guide (PDF, 4.64M), featured in the ADORE toolbox. The guide identifies ways to overcome barriers to local research participation, including how to develop and sustain community partnerships, promote health and science literacy, and address bias in workforce diversity. The guide was developed by the Local, Diverse Working Group, part of the National Strategy effort convened by NIA.

It takes thousands

Another resource we’re particularly excited about is a series of testimonial videos that tell the stories of study volunteers from ADRCs at the University of Wisconsin and Wake Forest University. These videos feature participants from all walks of life who discuss what motivates them and how research staff support them to participate in studies and trials.

Each video was made with a specific audience in mind, and their storylines include:

  • When both of Will’s parents developed dementia, he and his wife moved back into his childhood home to be full-time caregivers. He discusses how participating in a clinical trial helped him take better care of himself physically and receive emotional support from other caregivers in his community.
  • While Bob doesn’t have relatives with Alzheimer’s, he has a daughter with Down syndrome, which puts her at increased risk for developing dementia. He is a healthy control volunteer, motivated by his daughter’s condition and his love of science. He also discusses and debunks some concerns that may make potential volunteers hesitant to join a study.
  • Kay lost her mother to the disease and worries since Alzheimer’s runs in her family. She is a vibrant older adult who hopes that by volunteering, she can increase the chances of a brighter future for earlier detection and treatment of dementia for her children, friends, and neighbors.
  • Keretha also lost her mother to dementia, and she discusses how Alzheimer’s doesn’t just impact a person, but an entire family. She hopes to set an example for increased participation by the African American community, who have a higher risk for developing dementia.

You can find all the testimonial videos on the NIA website. We encourage you to download and share them as part of engagement and recruitment efforts for your clinical studies.

As Bob put it, “I’m just one drop of water in a bucket. But it takes thousands of drops to win the fight against dementia.”

A new team member

Finally, we’re pleased to welcome a new team member to oversee the implementation of NIA’s national recruitment strategy. Holly A. Massett, Ph.D., has been named NIA’s Senior Advisor on Clinical Research Recruitment and Engagement. She brings a wealth of experience in program evaluation, consumer research, and social marketing to NIA and can be reached at massetth@mail.nih.gov. Look for a future post from Holly to introduce herself in more detail and offer an update on her exciting work.

Contribute to the community

We hope ADORE will be a valuable tool, but we need you to put it to work and help make it better. Sign up for e-alerts to be notified about new recruitment resources. Contribute a resource to share with the research community. Send us your feedback about specific additions or requests you’d like to see by commenting below or emailing NIAADRR@mail.nih.gov.

Comments

Submitted by Roger Wong on May 15, 2019

I would like to share a relevant article we published recently that I did not see posted on the ADORE page: "Strategies for the Recruitment and Retention of Racial/Ethnic Minorities in Alzheimer Disease and Dementia Clinical Research" (http://www.eurekaselect.com/170921/article)

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