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Ida J. Spruill PhD, RN, LISW May 13, 2010

Partnering to Improve Health: The Science of Community Engagement among the Gullahs of South Carolina. Ida J. Spruill PhD, RN, LISW May 13, 2010. Objectives & Content. The People (Overview of South Carolina and the Gullah population) The Community (Community Engagement/Involvement )

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Ida J. Spruill PhD, RN, LISW May 13, 2010

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  1. Partnering to Improve Health:The Science of Community Engagement among the Gullahs of South Carolina Ida J. Spruill PhD, RN, LISW May 13, 2010

  2. Objectives & Content • The People (Overview of South Carolina and the Gullah population) • The Community (Community Engagement/Involvement ) • Project SuGar & The Science (UCP 3 gene) (Linkage scan) • Outcomes & Results (GWAS)

  3. South Carolina

  4. Cultural and Historical Link

  5. Why Project SuGar in the Gullah Homeland? Funding: W.M.Keck Foundation, NIH:DK4761, ADA,GENNID

  6. Garvey Hypothesis There are ethnic differences in the pathophysiology of the Metabolic Syndrome and Diabetes The Increased risk of Diabetes in African Americans has a genetic basis.

  7. SCIENCE Ascertain sib-pairs and pedigrees with T2DM, Obesity Phenotype: anthropometrics, glucose tolerance, lipids, blood pressure, health beliefs/practices Study genes contributing to T2DM and Obesity in a homogeneous African-derived population: whole genome scan, candidate genes SERVICE Health education, disease screenings, health fairs, referrals Project Sugar Objectives COBRE, MUSC Dept of Medicine

  8. Purpose and Aims Create a Diabetes Registry/DNA of 400 affected African American families Scientific Aims: • Isolate and Identify diabetes and obesity genes • Linkage Analysis • Genome-Wide Association Study (GWAS) Community: • Use Community-Based Participatory Research (CBPR) principals to engage the community

  9. PIs: W.T. Garvey • Jtoyika Fernandes • Citizen’s Advisory Committee Members Human Physiology Steve Willi Lidia Maianu Penny Wallace Amy Hutto Sara Shaughnessy Soonho Kwon Jyotika Fernandes Genetics & Molecular Kerry Lok George Argyropoulos Angela Brown Pamela Binns David McLean Kerin McCormack Kirby Smith Yuchang Fu Helliner Vestri Julian Munoz Community-Based Research Ida Spruill Ann Smuniewski Gloria Smith Deborah Daniels Andrea Collins Pam Wilson Susan Cromwell Fredrika Joyner Karen Small Gwen Maine Mattie Wideman Statistical Genetics Michele Sale (UVa) Carl Langefeld (WFU) Don Bowden (WFUStatistical Genetics Lingyi Lu (WFU)

  10. Inclusion Criteria • Affected biological sib pairs > 18 years of age • One living biological parent with T2DM • Born or raised on the Sea Islands • Biological parents born or raised on Sea Islands

  11. Charleston

  12. The People • Minimal genetic admixture (Pollitzer 1999, Garvey,2001) (<3.5%) • Geographical isolation and cultural identity • Large stable multi-generational families

  13. Admixture Estimates in African American Populations: Autosomal Markers Parra et al, Am J Physical Anthropol, 114:18, 2001 Parra et al, Am J Hum Genet, 63:1839, 1998

  14. The People • High prevalence and relative risk for T2DM, obesity, hypertension, lupus, prostate cancer • Uniform diet and lifestyle (maximize expression of disease in patients with susceptibility genes) (Garvey,1996)

  15. Why Type 2 Diabetes in Gullahs?African American 30 % of state’s population • Most of the newly-identified diabetes genes do not play a major role in diabetes risk in African Americans • Non-Hispanic Blacks : 13.1% • Non Hispanic Whites: 8% BRRSS,2006

  16. Project SuGar / CPR (Spruill,I.2005) Community

  17. Our Approach to the Community • Plan a socio-cultural assessment of the community • Study the culture and strengths of the community • Identify gaps in services • Acknowledge the different subcultures • Involve community in initial research plan • Match research staff to study population • Organize a citizen advisory committee

  18. Staffing

  19. Community Engagement: Citizen Advisory Committee .

  20. Community Services Free Screening COMMUNITY SProject SuGar Mobile Project Sugar mobile unit

  21. Our Participants & Outcomes 650 Families recruited Female Married Attended High School Have Insurance Preferred learning in Groups

  22. Health Beliefs • Diabetes is Inherited: 61.1% • Diabetes is prevented: 66.6% 11.8% use Home Remedies Most Common Remedies • Garlic * • Ho-hung tea • Vinegar and water • Cinnamon * • Goldenseal tea *Cited in literature as effective

  23. Quality of Care Referral to Ancillary Services • Diabetes class & dietician : 41.1% • Ophthalmologist : 32.8% • Dentist : 22.3% • Podiatrist :12.8% Self Management Behaviors • Reported Exercising : 55.6% • Monitored blood glucose daily: 27.7%

  24. Other Findings (Spruill,2007) • Communication patterns reflect social customs of the South (wear mask, no eye contact) • Language patterns ,I ain’t claiming it", falling off for losing weight • Practice patterns, “ If you on the needle, your sugar is bad”, • “Make do with what you have”, • “You need to know which roots, herbs to use for sugar and pressure”

  25. Human Uncoupling Protein 3 (UCP3 ) An important obesity candidategene. Has the potential to play an important role in energy balance and determination of body weight. Allele frequencies were determined and found to be similar in Gullah-speaking African Americans and the Mende tribe of Sierra Leone, but absent in Caucasians. Manuscript: Effects of Mutations in the Human Uncoupling Protein 3 Gene on the Respiratory Quotient and Fat Oxidation in Severe Obesity and Type 2 Diabetes George Angelopoulos,*et,al. (1998) J.Clin Invest,102,(7)

  26. Thrifty Gene • Helps store metabolic fuel more efficiently. • Increased stored fuel (i.e., fat) is advantageous in environment where intermittent access to food • Can lead to weight gain and obesity in an environment where food is plentiful

  27. Results from the Science Frayling TM. Nat Rev Genet 2007 Sep; 8:657-62 2007: A breakthrough year in diabetes genetics, T2DM genes found : C3,(2000) C1, (2003) C10,(2006)

  28. Linkage Analysis • Genetic linkage analysis is a statistical method that is used to associate functionality of genes to their location on chromosomes.

  29. Project SuGar Linkage Analysis • DNA submitted toTheCenter for Inherited Disease Research • 426 families (2-7 members) • Sib-pair study design with (834 Affected ), (194 Unaffected ) • Analysis: MERLIN (computer program) • Chromosomes: 14q and C7 in the Gullah population. (Implication for personalized medicine) Key phenotypes: Type 2 Diabetes, BMI, NMR Statistical Genetics: Michele Sale (Univ of Va) and Carl Langefeld (WFU)

  30. ResultsLinkage

  31. Chromosomes 7 and 14 C 7 C 14

  32. Genome Wide Gene Association Studies (GWAS) Can Identify Complex Disease Genes Saxena, R. et al. Genome-wide association analysis identifies loci for type 2 diabetes and triglyceride levels. Science316, 1331–1336 (2007). Broad Institute, Lund U, Novartis Scott, L. J. et al. A genome-wide association study of type 2 diabetes in Finns detects multiple susceptibility variants. Science316, 1341–1345 (2007). U of Helsinki, CIDR UCLA, NHGRI, U Michigan Sladek, R. et al. A genome-wide association study identifies novel risk loci for type 2 diabetes. Nature445, 881–885 (2007). McGill U, INSERM,

  33. Type 2 Diabetes Genes

  34. Transcription-Factor 7-like 2 (TCF7L2) • Identified as a major new diabetes gene on C-10 by Grant et al.Nat Genet 2006 March; 38: 320-323 • Shown to have a role in impairment of insulin secretion (rather than a defect in insulin action in peripheral tissues) • Play a major role in T2DM risks in African Americans (Lyssenko et al. J Clin Invest. 2007 Aug; 117:2155-63) (Diabetes,2009,UNC) • Do Not play a major role in T2DM risks in the Gullah population (Seale,2008)

  35. Genome-wide Association Study (GWAS) • Powerful research tools for identifying genetic variants that contribute to health and disease. • To identify common genetic factors that influence health and disease. • The study of genetic variation across the entire human genome that is designed to identify genetic associations with observable traits (such as blood pressure or weight), or the presence or absence of a disease or condition. • Potential for increased understanding of basic biological processes affecting human health, and the promise of personalized medicine.

  36. Project SuGar GWAS • Genotyping phase using the Affymetrix 6.0 product is scheduled to commence very soon, and anticipated to take 6-8 weeks. • Currently harmonizing the phenotypic datasets from the different studies. (PS/SIGNET) (Jackson Heart,) (Wake Forest) • Actual relevance for health outcomes is yet to be seen. (M.Sale)

  37. ConclusionsT.Garvey • The classic Metabolic Syndrome trait cluster is not operative in a population of African Americans with little European genetic admixture, • Different criteria for identifying metabolic risk should be developed as a function of race/ethnicity, perhaps based on ancestral genetic admixture, • Susceptibility genes can be unique or exert differential effects on metabolic traits as a function of race/ethnicity • Exercise and diet are good for everyone!!!!!!!!!!

  38. Project SuGar GWAS • M. Sale /(Molecular Geneticist) PI/ R01 Genetic contributors to Diabetes and Dyspipdemia in African Americans • I. Spruill Minority Supplement/ Qualitative component: • What is the likelihood that an individual will change his or her health behaviors if they have knowledge of a genetic susceptibility? • What is the best format and source for presenting genetic information? 3. J. Fernandes ( Re contact to obtain estimates of the prevalence of diabetes complications and co morbidities in Project Sugar participants

  39. Why Did our Plan Work?

  40. Culturally Appropriate Strategies“Coordinated Research” • Community: Staffing, engagement • Plan: Flexible protocol,direct,active recruitment • Rewards: Services to the Community

  41. Acknowledge the Culture Non-traditional family styles Blood relatives vs fictive kin Ask the Right questions Birth parents vs who raise you “What you tell me is in private”

  42. The Plan for Community Engagement & Recruitment Flexible Protocol • Recruit extended family members • Compensation • Weekend after hours • Inform consent read to participants • Direct and active recruitment

  43. The Plan for Community Engagement & Recruitment • Always provide a tangible service to the community, (SuGar Bus) • Find ways to keep the community engaged (attend a local church) Cultural events, Speaking engagements • Share results/finding with community (quarterly newsletter)

  44. The Plan for Community Engagement (CEnR)& Recruitment • You must have patience, • Acknowledge Altruism within the culture • “(I am doing this so my grand kids don’t have to suffer)” • Identify the gatekeeper in the family

  45. Questions843-792-3873spruilli@musc.edu

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