The National Institute on Aging (NIA), part of the National Institutes of Health, has launched a new online research tool to help increase participation by traditionally underrepresented populations in clinical trials on Alzheimer’s disease and related dementias.
Unveiled at the Alzheimer's Association International Conference (AAIC), Outreach Pro enables those involved with leading clinical research to create and customize participant recruitment communications such as websites, handouts, videos, and social media posts.
“We are facing a critical and growing need for people living with Alzheimer’s and related dementia, as well as those at higher risk, and healthy people, to participate in clinical trials,” said NIA Director, Richard J. Hodes M.D. “That need is especially acute for frequently underrepresented groups such as Black and Hispanic Americans, which is why Outreach Pro includes an emphasis on helping clinical trial researchers connect with these and other important communities.”
Outreach Pro is an integral part of NIA’s efforts to implement the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research. Released in 2018, the national strategy was developed in collaboration with the Alzheimer’s Association with input from government, private sector, academic, and industry stakeholders, as well as from individuals, caregivers, and study participants. The overarching goal is to engage broader segments of the public, including underrepresented populations, to participate in Alzheimer’s and related dementias clinical research.
“It is critical that clinical trials have appropriate representation to ensure we have a complete understanding of how well different therapies or approaches to dementia care work in different populations,” said Holly Massett, Ph.D., NIA senior advisor on clinical research recruitment and engagement, who oversees the implementation of the national strategy. “Outreach Pro was designed to provide well-tested and culturally appropriate outreach materials that resonate with diverse populations and encourage them to participate in clinical trials.”
To use Outreach Pro, researchers and clinicians first select desired templates with one of three communication goals in mind: 1) to educate about Alzheimer’s, related dementias, and/or brain health; 2) to increase awareness and interest in Alzheimer’s and related dementias clinical trials; or, 3) to provide information about a specific Alzheimer’s or related dementia clinical trial currently enrolling participants. Each template can then be tailored using a central library of messages, headlines, photos, and text that have been extensively tested among individuals representing diverse and underserved populations.
Outreach Pro’s current library of content includes materials specifically designed for a range of audiences, including Black Americans and Hispanic/Latinos. Initially, the materials will be available in English and Spanish, and there are plans underway to add Asian American and Pacific Islander resources and languages by Fall 2021. Materials for American Indian and Alaska Native communities will be developed and added in 2022.
NIA developed Outreach Pro and its content systematically by using literature reviews, environmental scans, listening sessions with stakeholders, focus groups, national surveys, and user testing. The NIA team created tool features in a culturally responsive way, so that all stages of content development reflect the culture and languages of the communities for whom the materials are designed. NIA plans to add content and scale up the tool’s capabilities based on feedback and performance measurement.
Outreach Pro expands NIA’s resources dedicated to recruitment diversity. For example, in 2020, NIA funded four exploratory Alzheimer’s Disease Research Centers that will broaden research initiatives with underrepresented groups, including Black Americans, Native Americans, and those in rural communities. In 2019, NIA launched the Alzheimer’s and Dementia Outreach, Recruitment, and Engagement (ADORE) Resources. The ADORE repository offers the research community resources to support recruitment and retention of volunteers into clinical trials and studies.
In total, NIA is supporting 270 Alzheimer’s and related dementia clinical trials, including those focused on lifestyle and caregiving interventions. Late-stage trials often include thousands of participants, requiring even more volunteers to help researchers meet recruitment goals for diversity.