It’s hard to recruit people for clinical research these days. And that is doubly true if the topic is Alzheimer’s disease and its related dementias, according to a post from the National Institute on Aging. Recruiting volunteer participants is a primary, persistent bottleneck that poses unique challenges to clinical trials researchers. Among these challenges are strict eligibility requirements for participation of study partners, sometimes invasive and time-consuming procedures, and barriers for underrepresented communities. A newer aspect is the engagement of pre-symptomatic or healthy volunteers as we try to intervene as early as possible in the disease process.
To address increasing concerns about difficulties in reaching study recruitment goals, the NIA, with co-facilitation from the Alzheimer’s Association and other organizations, is asking a wide range of stakeholders, particularly those underrepresented in research, to help develop a comprehensive National Strategy for Alzheimer’s Disease Clinical Research Recruitment and Participation. We very much want to hear ideas and views from the academic and pharma research communities, patients and families, clinicians and other health care providers, businesses and employers, advocates, government and community leaders, communications experts, research funders, and more. In short, we need you—to help formulate that Strategy and join in its implementation.
We are currently seeking public comment for feedback on the ideas generated by the working groups. We’re also soliciting new ideas, aiming to fill gaps. For this outreach, we are trying something new to NIA, but which has been used across NIH and HHS recently for just this sort of conversation—a crowdsourcing platform called IdeaScale. Different than a traditional Request for Information, this online platform will allow us to hear from and engage with diverse stakeholders, creating a dialogue among participants.
Want to help? Visit the National Institute on Aging today.