You may have heard of the rather audacious goal set by the U.S. National Plan to Address Alzheimer’s Disease – to prevent and effectively treat Alzheimer’s disease by 2025. While this plan offers great promise, it also shines the spotlight on the need for volunteer research participants.
And the need has never been greater or more urgent to reach the 2025 goal. More than 200 active U.S. trials and studies for Alzheimer’s disease and mild cognitive impairment are seeking more than 100,000 participants. It’s estimated that at least 10 people need to be screened for every one participant who meets study criteria – that means a minimum of 1 million people need to be screened
To overcome these odds, the National Institute on Aging (NIA), part of the National Institutes of Health, with facilitation from the Alzheimer’s Association, convened key stakeholders last spring to develop a national strategy that would help study sites and researchers recruit and retain a vast and diverse volunteer pool to participate in Alzheimer’s-related studies. Stakeholders included representatives from the governmental, private, academic and health care sectors, in addition to individuals and caregivers.
The emerging strategy focuses on major areas that could make a significant impact:
“Only by working together can we succeed in finding ways to encourage people to sign up for – and stay in – research trials,” says Jason Karlawish, MD, Penn Memory Center, University of Pennsylvania, who chaired the national effort’s working group. “We are focused on a broad and diverse sector of the population, including those currently affected by the disease, those at risk for the disease, healthy older adults and the family members, friends and caregivers who might be serving as study partners.”
After the stakeholders developed and refined their strategy recommendations, NIA posted them on an idea-sharing website that engaged the community to comment and/or propose new ideas. By “crowdsourcing” feedback and additional ideas, NIA sought wider input in the process.
Some of these ideas included:
With all these ideas in hand, NIA is finalizing the recruitment and retention strategy document that will be released late summer/early fall.
“The opportunity to build upon what we’ve learned thus far has never been greater,” says Laurie Ryan, PhD, chief of the NIA Dementias of Aging Branch. “However, in order to meet the 2025 goal to prevent and/or treat Alzheimer’s, we need to connect with diverse groups to significantly increase research participation. There is no ‘one-size-fits-all’ approach. We truly need a representative sample of those who get the disease and those who don’t – and to learn more about who’s susceptible to the disease and who seems resilient to it.”
Ryan says this national strategy will result in an online repository of recruitment best practices and materials that can be used at the local level, so recruitment can be customized to the surrounding community. She also hopes people can learn more about all the reasons why study participation can be a positive experience.
“For many, the knowledge that they’re ‘paying it forward’ to future generations is a great incentive,” she says. “But it can definitely be a two-way street. Yes, you’re giving back, but hopefully you’re also receiving benefits. You’re learning more about the disease, sharing information with others, being seen regularly by health care providers and often receiving more comprehensive evaluations than you might otherwise. These are all great reasons to consider participating in a research study.”
We’ll be sharing more about the national strategy as it’s published. For now, learn more about research studies in your area at www.endalznow.org/find-a-study.