Recruiting Older Adults into Research (ROAR):
Watch the 5 minute project presentation and pitch.
The ROAR project seeks to raise awareness and engagement about research participation among older adults:
- Starting with Alzheimer’s research, as a common interest with an urgent need
- Working through the aging services and public health networks – trusted intermediaries who have high touch with older adults and caregivers and may be interested in sharing this information, but need materials
- Resulting in an expanded pool of older adults who are willing to participate in studies and trials, who will help to accelerate scientific discovery.
Insufficient participant recruitment for research can delay or cause research study cancellation, a substantial waste of resources. The need for Alzheimer’s clinical research study participants is urgent: tens of thousands of volunteers are needed for research studies focused on delaying, treating or preventing this growing public health problem.
Through ROAR, three HHS agencies: The Administration for Community Living (ACL), the National Institutes for Health (NIH), and the Centers for Disease Control and Prevention (CDC) and their networks of state and community-based health and social service providers collaborated with researchers and private organizations to raise awareness, enhance knowledge and connect gatekeepers and older adults with easy, actionable opportunities for research participation.
The cross-agency team established partnerships with existing government-funded resources and registries such as ResearchMatch, a free, national recruitment registry funded in part by NIH; the Alzheimer’s Prevention Registry; and the Alzheimer’s Assocation’s TrialMatch service. The goal of the ROAR project is to significantly increase older adult enrollment in these registries, allowing for more targeted invitations to enroll in current and future research studies.
The HHS Ignite project resulted in:
- a robust, flexible, scalable outreach plan which will guide the team’s work together in the months to come;
- a set of draft materials that have been initially reviewed by stakeholders and are ready for pilot testing;
- a partnership with ResearchMatch to promote an easy action step for our audience with a unique URL (www.ResearchMatch.org/ROAR) that will allow us to track and measure the success of our efforts, as well as promoting other Alzheimer’s specific registries; and
- momentum and interest on the part of external organizations to join the ROAR effort.
The materials created, partnership formed and lessons learned from this effort can be expanded to include research for other conditions that impact older adults. This project builds on the success of an HHS Innovates award: Connecting to Combat Alzheimer’s which was a Secretary’s Pick and won the People’s Choice Award.
Amy Wiatr-Rodriguez (Project Co-Lead), Administration for Community Living
Jennifer Watson (Project Co-Lead), National Institutes of Health
Nina Silverberg, National Institutes of Health
Jane Tilly, Administration for Community Living
Kate Gordon, Administration for Community Living
Hunter McKay, Administration for Community Living
Angela Deokar, Center for Disease Control and Prevention
Project Lead’s Approving Supervisors:
Aviva Sufian, Administration on Aging, Administration for Community Living
HHS Ignite is the IDEA Lab’s incubator for Department staff with ideas on how to modernize government. Selected teams are introduced to startup methodologies for problem identification and project implementation. In the entrepreneurial spirit, Ignite projects are iterative, their impacts measurable, and their solutions scalable. This is one of 13 projects that participated in the beta year of Ignite which ran from June 2013 to February 2014.
Status update: 3 Months Later
As part of Ignite’s approach to evaluating it’s effectiveness, each Ignite team is asked to provide information on their project status three months following their pitch. The ROAR team indicates that there is leadership support for this effort to continue and dedicated time is being put to the project’s next steps. Ownership of the project though has moved to the National Institutes of Aging at NIH with Jennifer Watson as lead.
According to the project lead: “We are currently trying out ROAR materials in various parts of the country. We are receiving an enthusiastic response & people are interested in sharing the information to improve research participation among older adults, but limited resources limit the priority and reach of the project. Our plan is that we will receive feedback from the organizations trying out the materials this Summer & incorporate this feedback into materials that will be widely released for use by the aging services & public health networks in Fall 2014.”