Bass Connections Global Health: Integrative Global Health Research on Sickle Cell Disease
This project will engage an international team of faculty and students from a variety of levels and disciplines in collaborative research and education to develop an ecological framework for understanding and addressing Sickle Cell Disease (SCD). SCD is the first disease whose genetic etiology was defined, and is the most common single gene disorder in humans. The disease affects millions of people worldwide and is a major source of increased morbidity and mortality in both adults and children. The disease is most prevalent in parts of Africa, the Caribbean, the Mediterranean basin, the Arabian Peninsula, India, and South and Central America. The frequency and severity of SCD outcomes vary markedly between patients and at different ages; however, a substantial proportion of this variation remains unexplained by current predictive models based on genetic and other biological markers of risk. Although research suggests that phenotypic heterogeneity in SCD reflects complicated influences of genes, environments (broadly defined to include physical, social, behavioral, etc.), and their interactions, there is a dearth of empirical research on the role of non-biological factors in SCD outcomes. SCD, with its global distribution, distinctive social history, poorly understood pathophysiology, and well-established heterogeneity, serves as an ideal candidate for research that could inform efforts to improve health and healthcare generally, and address health disparities in the United States (US) and abroad.
The proposed research is the initial phase of a long-term endeavor to:
1. Understand the separate and joint contributions of biological and non-biological factors to phenotypic variability in SCD over the life-course.
2. Improve outcomes for people worldwide with SCD.
Our multidisciplinary project team will comprise faculty and students from the US (Duke), Jamaica, Cameroon, and South Africa who will focus on specific project-related tasks pertinent to their areas of expertise and interest, simultaneously integrating their parts into the whole. We will utilize, and as needed and feasible build upon, existing clinical, social, environmental, genetic, and phenotypic data from children and adults with homozygous SCD (HbSS) at the study sites.
The Specific Aims are to:
1. Reconcile patient datasets from the study sites.
2. Characterize relevant contextual (i.e. historical, cultural, and structural) dimensions of the different countries/study locations.
3. Conduct a proof-of-concept (POC) study to evaluate and refine a preliminary conceptual framework.
Students and faculty will work together to accomplish these aims through diverse educational activities and applied research.
Students involved in this project will acquire experience and skills pertaining to the design, implementation, and communication of integrative global health research and will contribute to the following expected deliverables: 1) a new holistic model and a new set of criteria to assess the role of the possible multifactorial sources of SCD heterogeneity; 2) hypotheses, preliminary data, and manuscripts for future externally funded grants; and 3) recommendations for attending to challenges and areas of need in relation to integrative global health research and clinical practice in SCD.
Our research project will serve as a vehicle for transforming educational experiences of students at Duke and our collaborating institutions. Students participating in this project will have the opportunity to:
• Gain hands-on experience in working with a diverse group of faculty and students to conduct global health disparities research
• Engage with and receive mentoring from faculty in African & African American studies, global health, cultural anthropology, behavioral sciences, medicine, environmental sciences, nursing, and human genetics/genomics
• Acquire knowledge and skills in different types of data collection, reconciliation, analysis, and interpretation, e.g. performing geospatial mapping, conducting and analyzing qualitative interviews, applying new technologies for integrating disparate data sets, and exploring the associations among multiple variables using an array of modern exploratory data analytic techniques
• Enroll in and receive course credit for a variety of selected courses directly related to the content and activities of the research project, including courses within and outside of students' major disciplines
• Enhance their writing skills (e.g. through conducting literature reviews) and contribute to study-related manuscripts and reports
• Improve their oral communication skills by presenting research findings to diverse audiences at local, national, and international meetings
• Compete for travel slots to Jamaica or Cameroon to gain first-hand experience with our collaborating international communities and conduct small-scale fieldwork
• Engage with SCD organizations at the state and community levels in North Carolina and SCD patient support groups in Cameroon and Jamaica to organize community-based forums to facilitate public discourse on, increase knowledge about, and help address local and international issues related to SCD
• Learn about countries, cultures, and peoples in diverse regions of the African Diaspora
• Participate in team-based learning through project meetings and seminars led by team members
• Assist with technological efforts to optimize communications and data management for the project to bridge the geographic and temporal divides created by international collaborations
• Participate individually or as a group in independent projects related to the grant. Students may also implement projects as part of courses they enroll in. Students will develop their projects in consultation with their mentors and/or course instructors and in line with the progression of the grant.
- Duke Global Health Institute