Alzheimer’s is initial focus
Increasing enrollment in clinical trials and studies is critical to reaching a primary goal of the National Plan to Address Alzheimer’s Disease : to prevent and effectively treat Alzheimer’s by 2025. Tens of thousands of participants of all kinds will be needed for trials focused on delaying, treating, or preventing this growing public health problem.
A cross-agency team is encouraging older adults to participate in clinical trials and studies.
With the National Plan as a catalyst and aided by a small award from an HHS program encouraging innovation, a cross-agency team from NIA, the Administration for Community Living (ACL), and the Centers for Disease Control and Prevention (CDC) approached the challenge of increasing clinical-trials participation  by bringing their aging, public health, research networks, and resources together. The effort, dubbed “Recruiting Older Adults into Research,” or ROAR, seeks to raise research awareness and engagement among older adults, connect them with easy and actionable opportunities to participate, and ultimately, expand the pool of older adults willing to participate in clinical studies and trials for Alzheimer’s and other health conditions.
A Research!America poll from May, 2013 found that only 16 percent of Americans report they or a family member have participated in clinical research. However, 76 percent feel that such research is very important and would be very or somewhat likely to participate in a trial.
The project’s initial focus is Alzheimer’s research, a common interest with an urgent need. The ROAR team is developing a set of educational materials with simple, persuasive messages about making a difference and helping future generations. Through summer 2014, the team will work with aging-services and public-health networks in several local areas across the country to try out the messages and materials and further refine them. These trusted local sources—senior centers, caregiver support groups, home care programs, public health clinics, and other organizations—reach millions of older adults, including people from diverse racial and ethnic backgrounds, low-income seniors, and rural residents, all of whom are underrepresented in clinical research.
To create an easy step that can be taken by seniors anywhere, the team is collaborating with existing resources and registries such as ResearchMatch , a free, national recruitment registry funded in part by NIH; the Alzheimer’s Prevention Registry , a component of the NIH-supported Alzheimer’s Prevention Initiative; and the Alzheimer’s Association’s TrialMatch  service. The strategy is to significantly increase enrollment of older adults in these registries, allowing for more targeted invitations to participate in current and future studies.
Recruiting Older Adults into Research (ROAR) seeks to engage older adults, including those of diverse ethnic and racial backgrounds, to volunteer for participation in clinical research, using aging services and public health networks as trusted sources of information, thereby helping accelerate scientific discovery.
Once the groundwork has been laid, the ROAR team’s next step will be to make the materials available broadly and team up with other organizations.
“There’s been a great response from the handful of state and local agencies we have contacted already,” says team co-leader Jennifer Watson, a senior public affairs specialist at NIA. “We’re hoping to build on that enthusiasm and seize specific opportunities as they arise with state and local governments and with various organizations, in the context of the National Alzheimer’s Plan, to let older adults know that they can make an important difference by participating in research.”
See also: Inside NIA blog post Encouraging older adults to participate in research  by Nina Silverberg