Reducing the Burden of Sickle Cell Disease at a Remote Island Clinic in Lake Victoria, Uganda: Student-led Collaboration Transforming Patient Care

040 Trent Hall, plus Zoom webinar

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Reducing the Burden of Sickle Cell Disease at a Remote Island Clinic in Lake Victoria, Uganda: Student-led Collaboration Transforming Patient Care

040 Trent Hall, plus Zoom webinar

ABOUT THE EVENT

Sickle cell disease (SCD) is a life-threatening genetic disorder and major global health equity crisis — while survival rates reach 99% in high-income countries, nearly 80% of affected children in Uganda do not survive past age five. This panel highlights student-led research transforming patient outcomes at Kalangala Health Center IV, a remote island clinic serving communities across 65 islands in Lake Victoria's Ssese archipelago. Presenters will share achievements and lessons learned across health systems strengthening, newborn screening, genetic counseling, data infrastructure, and the future of gene therapy access in resource-limited settings. Join us for a dynamic discussion on how collaborative, community-centered research is closing the gap between health inequity and quality improvement in care delivery through a decentralized partnership model.

Speakers

Kearsley Stewart, PhD (Moderator) Professor of the Practice of Global Health and Cultural Anthropology at Duke University. For the past eight years, Prof. Stewart has co-directed the DGHI–Kalangala Health Centre IV sickle cell research and training collaboration with her colleague, Joel Kibonwabake. Stewart and Kibonwabake have trained Duke, UNC-Chapel Hill and Ugandan undergraduate, medical, graduate students plus KHCIV staff in community and clinical sickle cell research. Her research interests include community-engaged sickle cell disease research in Africa, rapid point-of-care diagnostics, newborn screening capacity building, and the ethics of genetic testing in low-resource settings.

Dr. Allan Bakesiga is an Ugandan medical doctor and MSGH candidate at Duke University, where his work focuses on global neurosurgery, traumatic brain injury, and health disparities in low- and middle-income countries. His master's thesis evaluates the use of the Infrascanner Device for Traumatic Brain Injury Triage in Uganda, which introduces

Nicole Harms, MPH graduated from the UNC Gillings School of Public health and holds a Master of Public Health in Epidemiology and has experience in disease surveillance and program evaluation. Her contributions to the Duke-KHCIV collaborative include an analysis of patient data to support evaluation of the KHCIV sickle cell disease program aimed at strengthening clinic resources and community outreach to improve patient outcomes. 

Stephanie Ibemere, PhD, MSN, RN is an Assistant Professor in the Duke School of Nursing and Affiliate Faculty at the Duke Global Health Institute, with expertise in global health capacity building and clinical education related to sickle cell disease. Her research focuses on improving the clinical model of care for sickle cell disease in low-resource settings in sub-Saharan Africa and the United States through implementation science, technology, and community-engaged research.

Joel Kibonwabake is the ophthalmic clinical officer and chief clinician of the Sickle Cell Clinic at Kalangala Health Centre IV, which he founded in 2015 after recognizing a critical gap in care for island communities in Lake Victoria. Through his long collaboration with Duke, Kibonwabake has grown the clinic into a model for decentralized sickle cell treatment and research in Uganda, and envisions it becoming a hub for sickle cell research across sub-Saharan Africa.

Maddie Kitt, MSGH is a current recipient of a nine-month Fulbright U.S. Research Grant and recent DGHI MSGH graduate whose work focuses on improving health outcomes for people living with sickle cell disease, particularly in Kalangala, Uganda. Her research examines the cultural and clinical perspectives on herbal medicine use and the impact of these herbs on sickle cell pain crises. Following her Fulbright research, she will attend PCOM South Georgia’s medical school to pursue her passion for global and rural medicine.

Daniel Lee is a first-year medical student at UNC Chapel Hill with a passion for global health. His research focuses on identifying barriers to hydroxyurea therapy in Kalangala, Uganda, with a specific focus on utilizing biological markers to assess medication adherence using portable point-of-care devices. He plans on using his results from his study and his medical training to continue to serve the SCD patients of Kalangala, extending beyond a research lens to ensure equitable access to chronic disease management.

Julius Muchangi is a second-year Master of Science in Global Health candidate at the Duke Global Health Institute, whose thesis examines multi-level determinants of vaso-occlusive crisis among patients taking hydroxyurea in Kalangala, Uganda. He has conducted fieldwork at Kalangala Health Centre IV and has helped lead a collaborative team of Duke and UNC Gillings School of Public Health students on quality improvement initiatives for sickle cell disease care at KHCIV.

Dr. Deogratias Munube is a consultant pediatrician at Mulago National Referral Hospital and lecturer in Makerere University's Department of Pediatrics and Child Health, Uganda where he has spent over a decade leading groundbreaking research on sickle cell disease in Uganda. His research has mounted critical evidence on SCD-related stroke, finding that children with the disease are 300 times more likely to suffer a stroke than healthy children— work that is directly shaping national screening and treatment policy. He serves as mentor for the Kalangala Health Centre IV SCD clinic. 

Emily Pepper is an upcoming MPH graduate in Epidemiology from UNC Chapel Hill with prior experience supporting international development programs. Her recent work includes developing a Delphi Survey designed to identify expert consensus on strategies to improve health equity and access to care for those with SCD in Uganda. Next, she will develop policy briefs and host workshops with the Ugandan Ministry of Health to advance implementation of these strategies.

Dr. Kaleb Tsega is a medical doctor and first-year MSGH candidate at the Duke Global Health Institute. He is currently working on examining the decentralization of complex sickle cell disease care in Kalangala Health Centre IV, Uganda. His research interests lie at the intersection of non-communicable diseases and health systems.

This is a hybrid event with both in-person and remote attendance options. Lunch will be available.