Alzheimer’s research tool targets underrepresented groups

By Emily Jarecki

- Last updated on GMT

(elenabs/iStock via Getty Images Plus)
(elenabs/iStock via Getty Images Plus)

Related tags Alzheimer's disease Patient centricity Patient access patient engagement Clinical trials

The National Institute on Aging has launched Outreach Pro, an online tool aimed to help connect with underrepresented populations for Alzheimer’s trials.

The National Institute on Aging (NIA) has created a new online research tool, called Outreach Pro, to help researchers and clinicians increase awareness and participation of underrepresented populations in clinical trials relating to Alzheimer’s disease and other related dementias.

“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 Hodes. “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 was unveiled at the 2021 Alzheimer’s Association International Conference (AAIC), along with other key findings​ that addressed diversity in Alzheimer’s clinical trials.

This new tool helps clinical researchers recruit more participants by creating communications such as websites, handouts, videos, and social media posts.

Outreach Pro

Outreach Pro was created with three specific purposes: to educate the community about clinical trials, to recruit participants into clinical trials and studies, and to educate communities about brain health.

Outreach Pro is intended for all interested parties to use, often including researchers, academia, community organizations, and others working in brain health. Each template can be tailored using a central library of messages, headlines, photos, and text that have been extensively tested among individuals representing diverse and underserved populations.

To ensure the authenticity of the content for different audiences, the content was created after literature reviews, environmental scans, listening sessions with stakeholders, focus groups, national surveys, and user testing.

“Outreach Pro and its materials were systematically created following the best practices of health communication and public health using both qualitative and quantitative processes to design materials specifically for African Americans, Hispanics/Latinos, Chinese Americans, Indian Americans, and Filipino Americans,”​ said Holly Massett, NIA’s senior advisor on clinical research recruitment and engagement, who oversees the implementation of the national strategy.

Content materials are available for many audiences including Black Americans, Hispanics, and Latinos, and can even be created in English or Spanish. There are plans underway to add Asian American and Pacific Islander resources and languages by Fall 2021 and American Indians and Alaskan Natives by 2022.

Additionally, the NIA plans to add content and new capabilities from feedback and performance measurements.

Increasing underrepresented group participation

Creating Outreach Pro is one way the NIA is trying to implement the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research​- a strategy that has a particular focus on underrepresented communities.

The National Strategy was released in 2019 by the NIA and was developed with facilitation by the Alzheimer’s Association and collaboration from the government, private, academic, and industry stakeholders, as well as from individuals, caregivers, and study participants.

“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 Massett. “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."

Prior efforts

Previously 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 Alzheimer’s and Dementia Outreach, Recruitment, and Engagement (ADORE) Resources​. This offers resources to support the recruitment and retention of participants into clinical trials and studies.

In total, NIA is supporting 270 Alzheimer’s and related dementia clinical trials​, including those on lifestyle and caregiving interventions. 

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