In 2022, GAP launched our Inclusive Research Initiative (IRI) Program to establish community relationships built on improving brain health education and access to health resources in underrepresented communities.
Since then,
1250+
Community Partnerships identified between GAP-Net sites and local, community-based organizations
850+
Participants screened from underrepresented populations across four studies
225+
IRI Visits to clinical research sites
What is the Inclusive Research Initiative (IRI)?
The Global Alzheimer’s Platform Foundation (GAP) launched our Inclusive Research Initiative (IRI) in February 2022 as a result of successful recruitment tactics and strategies utilized in our inaugural study, Bio-Hermes, which exceeded its recruitment goal of 20% of volunteers enrolled from underrepresented populations. Since its implementation, the IRI team has also exceeded recruitment goals in several GAP-enabled neurodegenerative clinical trials.
IRI is an expansive diversity and inclusion program aimed at substantially increasing representation of racially and ethnically minoritized communities in clinical research trials through culturally tailored recruitment and retention practices across North America. With a focus on relationships and education, the initiative seeks to establish relationships with GAP-Net sites and their community members built on trust, understanding, and unification with our programs and resources to increase site capacity to work with diverse communities, such as Community Connectors, Mobile Research Units, and the GAP-IRI Advisory Committee.
By being intentional, GAP-IRI wants to ensure that representation in neurodegenerative research is not an afterthought but a priority that is laid into the foundation and formation of every GAP-enabled clinical trial.
Community Connectors
Community Connectors are strategically-based GAP staff across the United States who help GAP-Net sites expand their reach to include traditionally underrepresented communities to build enduring, mutually-beneficial relationships. They provide increased awareness of the site and available research within communities and help promote the site as a healthcare resource focused on meeting people where they are. GAP-IRI works to identify potential collaborative relationships with organizations through a detailed Community Mapping exercise to identify influential local organizations, community leaders, and safe-spaces representative of the culture we are working alongside.
Mobile Research Units
GAP, in partnership with a study sponsor, designed and launched a Mobile Research Unit (MRU) to reach people who may not have regular access to brain-healthcare. Our innovative MRU, THOR: Taking Health on the Road, provides on-site access to clinical trial services as well as educational resources. THOR extended the reach for GAP-Net sites in Florida, aligning with events in communities and working with community-based organizations to host events.
This collaboration led to 20 community outreach events for underrepresented communities with over 325 people screened for an active study in five months, and 80% of surveyed GAP-Net Site staff agreed/strongly agreed that THOR had a positive impact on relationship-building and prescreening rates for underrepresented populations.
GAP-IRI Advisory Committee
To expand our learning and perspective on how we can be more intentionally inclusive and support GAP-Net as well, GAP-IRI is informed by an Advisory Committee. The Advisors are respected community and organizational leaders, research site Principal Investigators, health care providers (HCPs), and patient advocates from across North America who meet quarterly and assist GAP-IRI with the following goals:
- Identifying strategies to recruit and retain study participants from historically underrepresented populations
- Providing recommendations for successful implementation of community awareness campaigns prior to study launch
- Reviewing study materials and tools to maximize effectiveness in diverse communities
- Providing recommendations for relationship and trust-building initiatives between community-based organizations, GAP-Net and GAP
The current committee members are listed below:
Dennis Chan, 2020 Citizen Scientist Catalyst Award Elevated Honoree
Dr. Teresa Clarke, Renstar Medical Research
Edna Kane-Williams, Chief Diversity Officer, AARP
Stephanie Monroe, UsAgainstAlzheimer’s
Bridget Monroe, Community Connector, K2 Medical Research
Terrie Montgomery, Patient Advocate
Monica W. Parker, MD, Emory University
Pamela Price, Balm In Gilead
Melissa Robinson, Black Healthcare Coalition
Dr. Kina White, Director, Office of Community Health Improvement Mississippi State Department of Health