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To ensure that prevention and treatment interventions will be effective for all people living with Alzheimer’s and related dementias, investigators must recruit more research participants from diverse populations. These include Black/African Americans and Hispanics/Latinos, who are at higher risk of dementia than white Americans. As a federal agency, NIH is helping to coordinate, collaborate, and fund a range of activities to achieve this goal.
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In 2018, NIA, in collaboration with the Alzheimer’s Association and many other stakeholders, developed and released the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research . The main goal is to engage broad segments of the public in the Alzheimer’s and related dementias research enterprise. Recruitment is particularly focused on the inclusion of underrepresented communities that are disproportionately affected by these diseases.
Since the launch of the national strategy, NIA has implemented several activities to facilitate and enhance clinical study enrollment and retention:
Enhancing outreach targeted to specific underrepresented groups: NIA has been conducting focus groups, surveys, and stakeholder interviews to tailor recruitment materials for clinical studies to reach underrepresented populations more effectively.
In 2020, using the findings from this research, NIA developed a set of materials and messaging — including videos and other multimedia, print ads, posters, and social media — tailored to Spanish-speaking communities and available in both English and Spanish.A similar approach was used in 2019 to develop materials for Black/African American audiences. Additional communication activities to improve outreach to other underrepresented populations is underway, including the development of clinical study recruitment materials and messaging for Chinese Americans, Filipino Americans, and Indian Americans in English, Mandarin, Tagalog, and Hindi.
- Providing a web-based tool for recruitment: NIA is developing a web-based communication tool, called Outreach Pro, to enable health care professionals to more easily produce and brand tailored clinical trial recruitment materials and strategies. Designed to help reach multiple cultures and those who do not speak English, the tool is slated to launch in late 2021. It will enable the research community to access, adapt, and personalize materials that NIA has developed — and will continue to develop — for underrepresented communities.
- Tracking enrollment progress: A key factor for improving enrollment is to help researchers monitor actual recruitment against planned milestones. To achieve the ability to track, report, and manage enrollment data, NIA recently awarded a contract to develop a unified Clinical Research Operations & Management System (CROMS).
Through CROMS, NIA will track, manage, and report enrollment data and activities made possible via the NIA-funded clinical research portfolio. CROMS will provide critical and real-time information to ensure that NIA-supported clinical studies are making appropriate progress toward reaching their inclusion recruitment goals related to multiple underrepresented groups, including minorities.
Using data from CROMS, NIA can then implement and enforce policies to address studies that perform poorly with respect to minority enrollment, as well as track studies that successfully enroll participants to identify and disseminate best practices to other grantees.
Database of hundreds of resources for researchers to use for recruitment
NIH invests in strategic clinical trial recruitment and retention initiatives, including a web-based repository of resources called Alzheimer’s and Dementia Outreach, Recruitment, and Engagement (ADORE). Established in 2019, the repository is an online, searchable database of resources for engagement, recruitment, and retention of study participants. For example, ADORE has resources to engage and encourage Asian/Pacific Islander, Black/African, and Hispanic/Latino Americans to participate in clinical studies.
Enhancing and developing the science of recruitment
A crucial piece of NIA’s implementation of the national recruitment strategy involves developing the science of recruitment and retention. NIA continues to direct and fund several projects with researchers to better understand the myriad challenges researchers and potential participants face in clinical trials recruitment, including:
Examining diversity in research: Through the Examining Diversity, Recruitment, and Retention in Aging Research funding opportunity, NIA awarded support for several projects focused on improving research tools, methods, and recruitment practices, such as:
- A culturally tailored registry to educate and engage Asian American/Pacific Islanders about research participation
- A recruitment approach that relies on different generations of people to engage older adults
- A collaborative, transdisciplinary network to engage, educate, and motivate Hispanic/Latino community members to participate in research
FOREVER: NIA recently funded Foundations of Representative Engagement, Valid & Effective Recruitment (FOREVER) in Alzheimer’s Research .
Through this project, researchers are developing and implementing novel methods for recruitment, engagement, and retention of minorities into Alzheimer’s and related dementia studies through community engagement and the Alzheimer’s Disease Research Centers .
The research team is also developing recruitment, engagement, and retention metrics and interventions, and establishing communications frameworks to improve literacy for research communities and the general public.
- Symposium about developing the science of recruitment: To further underscore the importance of building a robust scientific foundation, NIA and the Alzheimer’s Association collaborated to host the Developing an Applied Science of Recruitment and Retention for Alzheimer’s Disease and Related Dementia Clinical Research Symposium at the 2020 Alzheimer’s Association International Conference.
This virtual symposium provided a broad perspective that builds on existing scientific knowledge to support the goal of ultimately accelerating and expanding research efforts on recruitment strategies for clinical trials.