What to know
Principles 1–6 ask researchers to be clear about purposes or goals of engagement effort, learn the community, and establish long-term goals based on community self-determination. This partnership used a local citizen advisory committee (CAC) to ensure that the goals of the researchers were consistent with the goals of the community.
Background
Gullah-speaking African Americans have high rates of type 2 diabetes characterized by early onset and relatively high rates of complications (Sale et al., 2009). Researchers hoped to discover diabetes-specific alleles in this community because the Gullahs have a lower admixture of non-African genes in their genetic makeup than any other African American population in the United States due to their geographic isolation on the South Carolina coastline and islands. In addition to the scientific objective of identifying the genetics behind diabetes, Project SuGAR (Sea Island Genetic African American Family Registry) had an important second objective: to provide community outreach to promote health education and health screenings relative to metabolic and cardiovascular diseases.
Methods
The project used a CBPR approach. Investigators organized a local citizen advisory committee (CAC). They did this to ensure that the research design was sensitive to the cultural and ethnic background of the community. This committee was involved in all phases of the research study.
Results
Services provided to the community included
- Health education fairs
- Cultural fairs
- A mobile “SuGAR Bus” to conduct health screenings
- Jobs for community members who were staff on the project
Investigators exceeded their enrollment goal with 615 African American families, totaling 1,230 people, contributing to the genome study. The success of their recruitment strategy helped researchers create a world-class DNA registry. It has identified markers for diabetes, including novel type 2 diabetes loci, for African American populations, on chromosomes 14q and 7.
Comment
Started in 1996 and still operating today, the local CAC's longevity shows the community engagement successes employed by Project SuGAR. The CAC has dual goals of establishing a family registry with DNA and developing long-term collaborations to promote preventative health. Under the new name Sea Islands Families Project, the local CAC oversees the use of the Project SuGAR registry. They have also branched out into similar community engagement projects. They collaborate with Systemic Lupus Erythematosus in Gullah Health and the South Carolina Center of Biomedical Research Excellence for Oral Health. The local CAC adheres to the principles of CBPR and advocates community input at the initial development of the research plan. To this end, investigators who are new to the Gullah community, and interested in community-based genetic research, are asked to present their research plan to the council members before initiation of research projects. Investigators are also asked to present their findings as well as any publications to the group.
Applications of Principles of Community Engagement
Project SuGAR exemplifies Principles 1–6, which ask researchers to
- Be clear about the purposes or goals of the engagement effort
- Learn about the community, and
- Establish long-term goals based on community self-determination.
This partnership used a local CAC to ensure that the researchers' goals were consistent with the goals of the community. The ongoing nature of the MUSC-Gullah collaboration illustrates Principle 9.
References
Fernandes JK, Wiegand RE, Salinas CF, Grossi SG, Sanders JJ, Lopes-Virella MF, et al. Periodontal disease status in Gullah African Americans with type 2 diabetes living in South Carolina. Journal of Periodontology 2009;80(7):1062-1068.
Johnson-Spruill I, Hammond P, Davis B, McGee Z, Louden D. Health of Gullah families in South Carolina with type 2 diabetes: diabetes self-management analysis from Project SuGar. The Diabetes Educator 2009;35(1):117-123.
Spruill I. Project Sugar: a recruitment model for successful African-American participation in health research. Journal of National Black Nurses Association 2004;15(2):48-53.
Sale MM, Lu L, Spruill IJ, Fernandes JK, Lok KH, Divers J, et al. Genome-wide linkage scan in Gullah-speaking African American families with type 2 diabetes: the Sea Islands Genetic African American Registry (Project SuGAR). Diabetes 2009;58(1):260-267.
Websites
http://academicdepartments.musc.edu/sugar/progress.htm
http://clinicaltrials.gov/ct2/show/NCT00756769
http://academicdepartments.musc.edu/cobre/overview.html