All Means All: Improving Access for Traditionally Under-Represented Communities in Clinical Trials
Genetic factors, socioeconomic disparities, and an increased prevalence of chronic health conditions are all risk factors leading to health disparities in developing Alzheimer’s.
20% of Americans diagnosed with Alzheimer’s are African American/Black and they endure 33% of the national cost. Similarly, the economic burden weighs heavily on the Hispanic/Latino community, with an estimated cost to families of $30 billion by 2030.
African Americans/Blacks represent less than 5% of participants in clinical trials, while Hispanics/Latinos make up less than 1% of trial volunteers.
Research shows barriers to participation in clinical trials include limited access to physicians, limited access to transportation, historical mistrust and misunderstanding, lack of awareness about clinical trial opportunities, and the inability for study partners to take time off work to facilitate trial participation.
A potential participant’s awareness, knowledge, and access to an appropriate clinical trial are essential, intersecting factors that influence participation in and successful representation of a diverse population pool in a clinical trial. The number of traditionally under-represented people enrolled in Alzheimer’s disease clinical trials needs to increase to ensure any therapies and treatments found benefit ALL.
Could regularly increase traditionally under-represented enrollment in Alzheimer’s clinical trials from 10-25%
Facilitates trust between the community, local health care providers, and the research sites as knowledge, awareness, and access improves
Supports clinical trial sites in establishing effective and meaningful outreach strategies and relationships
Meets the community where they are, when they are ready, improving the opportunity for success.
Increases research site capacity to adapt to diversity and the cultural contexts of the communities they serve
A multi-faceted approach focused on awareness, knowledge, and access:
Community Mapping: Mapping areas with a high density of people from underrepresented populations to better understand potential partnerships, relationships and referral pathways for clinical trial sites.
Community Outreach: Deploy community connectors to identify and partner with community-based organizations, media outlets, advocacy groups, health care providers and community leaders as identified in community mapping exercise.
Pop-Up or Mobile Units: Bring additional resources to the community to increase access and meet people where they are by starting pop-up, community-based “satellite” sites and bringing in mobile units for recruitment and screening.
New Site Development: Identifying and partnering with community physicians already serving people from traditionally underrepresented populations to help them establish a clinical trial site or introduce trials into their existing health care clinic.
For a bibliography, please see www.globalalzplatform.org/Biblio