Seeking your ideas for ways to enhance recruitment and retention of Alzheimer's disease study participants
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. 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.
Developing a national strategy
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.
Join the conversation!
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.
How does this crowdsourcing thing work?
To comment, please visit and join our IdeaScale community, to browse ideas that have already been submitted, comment, cast a non-binding vote for your favorites, and submit your own ideas. It is vital that participation and comment reflect a diverse array of perspectives and priorities. So, please, invite others—colleagues, relatives, or friends who might have a good idea about what works and what doesn’t in encouraging study participation—to be part of the discussion as well. We’re seeking ideas in key topic areas such as:
- Optimizing recruitment by building trusting relationships in local communities,
- Raising national awareness about participation in studies,
- Enhancing the capacity of study sites,
- Tracking our progress, and
- Cultivating a science of recruitment.
The public comment period is planned to run through April 15.
What’s happened so far to develop a strategy?
Over the past year, an initial group of dedicated volunteer experts has worked to draft initial recommendations. To name just a few, we want to thank our co-facilitators at the Alzheimer’s Association, members of a Strategy steering committee, and tireless working groups led by:
- Dr. Jason Karlawish, Outreach, Recruitment, and Education core leader, University of Pennsylvania School of Medicine Alzheimer’s Disease Research Center, who chaired the working group focusing on national approaches
- Dr. Pierre Tariot, director, Banner Alzheimer's Institute and co-director, Alzheimer's Prevention Initiative, who chaired the working group on capacity building
- Dr. Laura Baker, associate director, Wake Forest Alzheimer’s Disease Core Center, who chaired the working group focusing on local and diverse efforts.
They looked at recruitment and retention from the national and local perspectives, and what actions are needed to enhance messaging, partnering, building study site capacity and more. Their dedication, diligence, and thoughtfulness are the foundation for the wider discussion we invite today.
What happens next?
After receiving your ideas, we’ll be analyzing and organizing them, with the working groups and others, to view and evaluate the input we’ve received. We’ll finalize the national recruitment strategy document over the next few months.
But that is only the beginning. The Strategy can only succeed when we all take part in real action to move forward. We’re eager to continue the conversation and with your help, to implement the components of the Strategy to optimize participation in Alzheimer’s and related dementias research.