The NIH INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE) Project seeks to improve health and quality-of-life for individuals with Down syndrome (DS). This Notice of Special Interest (NOSI) announces NIH support for exploratory/developmental grant (R21) applications that are focused on community-based participatory research (CBPR) in DS to address health disparities and that meet programmatic objectives for the INCLUDE Project.
Individuals with DS experience greater health disparities than the general population. These disparities in the DS community stem from disparities in healthcare services including receiving preventive services and access to quality care. Although the lifespan of individuals with DS has increased dramatically in the last few decades, the racial disparities in life expectancy are glaring. The median age of survival for Blacks and other racial groups falls way behind that of individuals with DS who are White although the prevalence of DS among all racial groups is about the same. Hence, it is important to understand the social determinants of heath (race, ethnicity, gender, age, geography, and socioeconomic status) that lead to such disparities in the DS population. The Healthy People 2030 initiative [United States Department of Health and Human Services, 2030; https://health.gov/healthypeople] has also added “Social Determinants of Health” as a new objective to reduce health disparities and increase efforts to improve the health and well-being for all.
To fully engage and understand the various factors (social, environmental, economic) contributing to health disparities in those with DS, we encourage collaboration and partnership among DS community members (those with DS, family members, self-advocates, and advocates) as well as various key stakeholders (scientists, clinicians, policy makers, educators) to propose projects that address these issues.
The goal of this Notice is to encourage CBPR where researchers fully engage with the community members to understand culturally appropriate issues, to evaluate barriers (systemic and structural), to determine appropriate research methods, to engage the community in the data collection and analysis process, to plan effective interventions, to share knowledge and skills, to implement interventions with input from community members, to strengthen community partnerships, and to educate and return research findings to the community with the ultimate goal of reducing health disparities. CBPR is defined as scientific inquiry conducted in communities and in partnership with researchers.
The purpose of this Notice of Special Interest (NOSI) is to support exploratory and developmental research project grant (R21) applications that propose to develop and strengthen partnerships between minority health and health disparity communities and researchers to plan the implementation of effective health interventions that will improve community health and reduce health disparities and improve health outcomes. For the purposes of this Notice, the definitions of minority health and health disparity communities are described in the NIH Minority Health and Health Disparities Strategic Plan (https://www.nimhd.nih.gov/about/strategic-plan/nih-strategic-plan-definitions-and-parameters.html#:~:text=NIH%20defines%20health%20disparity%20populations,or%20more%20of%20these%20descriptions).
This notice applies to due dates on or after October 16, 2022 and subsequent receipt dates through March 17, 2025.
NOT-OD-22-142
