Health
Ugandan sickle cell researchers keep pace with aging patients
Article courtesy Fogarty International Center
September/October 2024 | Volume 23 Number 5
Until recently in Uganda, most children with sickle cell disease (SCD) never celebrated their fifth birthday—only 30% lived past this milestone. This low survival rate was mainly due to inadequate health care interventions for these children, plus lack of widespread newborn screening, explains Dr. Sarah Kiguli , a professor at Makerere University College of Health Sciences. Things are different today. Over the past decade, the East African nation has instituted a policy of screening newborns while strengthening strategies to manage their health. This means more children with SCD are growing into adolescence and adulthood.
Challenges still exist, says Kiguli. For example, the community and district facilities where many Ugandan children are born cannot provide comprehensive services, including newborn screening. Another issue: the risk of SCD complications related to kidneys, lungs, heart—almost all organs—grows higher as patients grow older, yet scientific research in Uganda hasn’t caught up with the reality of these longer lives. As a result, teens and adults with SCD don’t get “the care they deserve,” says Kiguli.
“It’s very painful for us pediatricians to see our patients encounter challenges and problems when they transition to adult care.”
Renewed research focus
Despite years devoted to children’s health, Kiguli believes it’s time to prioritize studies exploring appropriate SCD management in teens and adults. “We need solutions that address all the patients’ needs, including reproductive health, as they transition out of childhood.” She’s spearheaded a multidisciplinary research training program for researchers focused on the needs of people with SCD at all ages: Enhancing Research capacity for Sickle Cell Disease and related NCDs across the Lifespan in Uganda (ENRICH).
“Among our PhDs, we don’t have anyone from pediatrics—and that’s fine,” says Kiguli. Importantly, the researchers are trained as a group to amplify the benefits of multidisciplinary collaboration. “We’ve been working in silos—pediatricians alone, physicians alone, social scientists alone—that won’t help us address the comprehensive needs of these patients.”
Methodology has also been given sufficient consideration. “We provide both individual and team mentorship from the beginning,” said Kiguli. Monthly meetings help trainees develop personal development goals and career path plans in the hope they will continue in the field. The program also provides research training to health professionals, such as medical doctors, laboratory personnel, and nurses, who are not necessarily doing degree programs, “so those who manage patients routinely might also benefit,” said Kiguli.
South-to-South unity
For the project, Makerere University has partnered with Busitema University, located in eastern Uganda, where “prevalence of the sickle cell trait is as high as 20%,” says Kiguli. (Sickle cell trait refers to when a person has inherited one mutated allele of the sickle cell gene, not two.) This local prevalence contrasts with about 13% prevalence elsewhere in the country. Studying the disease in a high burden locale is highly relevant, because results may influence policy and treatment guidelines.
Kiguli has other reasons for collaborating with Busitema University, which is less than 15 years old. “We want to build capacity at this young institution since our colleagues there have less chance of doing research than we at Makerere do.” Working and supervising trainees together will give Busitema’s faculty much-needed experience, while providing opportunities for faculty at both universities to learn from each other. Kiguli also hopes the new collaboration will advance progress made as result of the universities’ past partnerships. “Capacity must be built in a sustainable way,” says Kiguli.
“It’s important to work collaboratively and not competitively—this is just as important for Makerere University as it is for Busitema University.”
ENRICH trainees talk about their projects
Dr. Jackline Akello
Dr. Jackline Akello, PhD candidate
Dr. Jackline Akello, PhD candidate
My project is “Sickle cell disease in pregnancy: Experiences in provision and access to care and adverse pregnancy outcomes at Mbale and Kawempe Referral Hospitals.” As an obstetrician and gynecologist, I work as a lecturer at Makerere University and provide clinical care at the two national referral hospitals. I have encountered significant challenges in managing pregnant women with sickle cell disease (SCD) due to a number of healthcare navigation challenges. Additionally, the diverse cultural beliefs associated with SCD in Uganda affect access to care and ultimately outcome and quality of life for the patient.
By October, I will have started the enrolment of 161 pregnant women with confirmed SCD for my project. These participants will be followed throughout their pregnancies to track maternal and fetal complications, including stillbirths and low birth weight. Their experiences with the healthcare system will also be explored. As a Safe Motherhood champion, I have been focusing on hypertensive disorders in pregnancy, including pre-eclampsia, but this October at the Safe Motherhood Conference I will discuss the effects of SCD during pregnancy with the Ministry of Health. One of the endpoints of my study is to improve care for pregnant women who have SCD to enhance their pregnancy experience and outcomes.
Dr. George Paasi
Dr. George Paasi, PhD candidate
Dr. George Paasi, PhD candidate
My project is “The Clinical Epidemiology, Spatiotemporal Patterns and Disease Modifiers of Severe Malaria among Children with Sickle Cell Disease in Eastern Uganda.” Uganda ranks fourth among countries with high burden of SCD and is in the top 10 with respect to malaria burden. Eastern Uganda has the highest burden of both diseases. My project addresses this dual burden of SCD and malaria in eastern Uganda—I want to decipher the SCD-malaria syndemic in this region.
I’m a medical doctor, I have a master’s in public health, and I just finished a fellowship in infectious disease, epidemiology, and biostatistics. I’ve worked at Mbale Clinical Research Institute for the last 10 years. Previously, I worked on an NIH-funded trial in Africa called Realizing Effectiveness Across Continents with Hydroxyurea (REACH) as a medical officer, and now I’m embarking on this PhD training. My hope is that the findings from my study will improve the identification of patients with SCD at risk of adverse outcomes when they get malaria. I also want to identify, through spatial temporal analysis, hotspot locations that require priority interventions. I also want to gain skills as an independent researcher in SCD and make a meaningful contribution to this field.
Dr. Anita Arinda
Dr. Anita Arinda, PhD candidate
My project is “Prevalence, associated factors, course and impact of major depressive disorder in adolescents with SCD in Mulago National Referral Hospital.” We have limited data on mental health of adolescents with SCD, so that’s why my project mainly looks at depression in adolescents (ages 10 to 17).
In our setting, we are fortunate that children with SCD live past their fifth birthday thanks to improved health care, but this presents new challenges. During adolescence, patients enter a crucial stage where they’re trying to develop their identity, yet they’re also beginning to understand the implications of their condition—that having this serious health condition cuts their life short. I want to understand their experiences. How does depression in adolescents with SCD differ from depression in adolescents without SCD? We know that sickle cell disease causes inflammation, so does that contribute to their depression? How does depression affect clinical outcomes, if at all?
If we can understand the underlying mechanisms of depression in teens with SCD, then we might find new ways to manage their care (as opposed to conventional treatment with antidepressants). I’ll do my research at Mulago National Referral Hospital, which has a clinic dedicated to children and teens with sickle cell disease. The clinic provides many services, but unfortunately no specialized mental health services. One day I hope that changes, so that children with SCD and depression can get help early.
Health
Ekyaalo Diagnostics; Johns Hopkins University Partners with Makerere and MUST to Advance AI Innovation for Breast Cancer Diagnosis
By Joseph Odoi
Globally, Breast cancer remains a serious health challenge, with the World Health Organization (2022) reporting over 2.3 million new cases annually and nearly 670,000 deaths. In Uganda, breast cancer is one of the leading cancers among women, yet the majority of patients are diagnosed at late stages due to delays in accessing diagnostic services, most of which are centralized at the Uganda Cancer Institute (UCI) in Kampala. Since 72% of Uganda’s population lives in rural areas, women often face late diagnosis due to long travel distances. Even after accessing care, results can take 1–6 months due to the slow process of transporting samples to central laboratories. This delay directly impacts the timely start of treatment.
To address this gap, Johns Hopkins University in collaboration with Makerere University and Mbarara University of Science and Technology (MUST), is spearheading innovative solutions that leverage artificial intelligence (AI) and low-cost technologies to improve early diagnosis and treatment.
As part of this collaboration, the Centre for Maternal, Newborn, and Child Health Research at Makerere University School of Public Health led by Associate Professor Peter Waiswa in July hosted a team of graduate biomedical engineers from the Center for Bioengineering Innovation and Design (CBID) at John Hopkins University.
The team is developing a low-cost, AI-powered technology called Ekyaalo Diagnostics, aimed at reducing the turnaround time for breast cancer diagnosis, especially in hard-to-reach areas. As part of their work, they undertook a learning tour at the Ministry of Health, Uganda Cancer Institute, and regional cancer referral centres. The purpose was to map stakeholders in the breast cancer space, gather Ekyaalo diagnostic technology usability feedback, and understand the local innovation ecosystem in breast cancer care.
Ekyaalo Diagnostics and Bringing Pathology Closer to Communities
The flagship innovation, Ekyaalo Diagnostics, is a portable AI-powered whole-slide scanner (WSS) designed to digitize cytology samples at Health Centre IVs and General Hospitals. These digitized images are securely transmitted to pathologists at higher-level facilities for timely review, eliminating the need for physically transporting samples to Kampala.
This technology has the potential to reduce diagnosis delays from several months to just a few days, thereby improving survival outcomes for breast cancer patients.
Building Local Solutions to Global Challenges
In addition to Ekyaalo Diagnostics, Makerere researchers at the Department of Biomedical Engineering are also advancing other innovations such as development of artificial breast prototypes to be used in educating women on breast cancer symptoms while Research at Mbarara University led by Dr. William Waswa, are developing PapsAI, a low-cost automated tool that support whole slide scanning of slides for cervical cancer screening.
These initiatives are aligned with the National Cancer Control Plan (NCCP) of the Ministry of Health, which emphasizes prevention, early detection, timely diagnosis.
Design Challenges and Considerations
Despite the progress being made, challenges persist, according to the team’s findings from the tour,these technologies hold great promise however their success in Uganda will depend on addressing some critical barriers.
One of the biggest challenges is limited staffing. Many lower-level health facilities lack trained laboratory personnel to prepare slides. For this reason, new technologies must be designed to be simple, user-friendly, and capable of being adopted after short training sessions.
Another major barrier is equipment maintenance. Past medical innovations in Uganda have often struggled with frequent breakdowns and software failures. The team emphasized that new diagnostic tools must be affordable, durable, and resistant to common system crashes if they are to serve rural health facilities effectively.
Finally, high operational costs continue to undermine sustainability. Some innovations fail because their maintenance costs are too high or because they are incompatible with existing health systems. Ensuring cost-effectiveness and system integration will therefore be vital for the long-term success of breast cancer diagnostic technologies in Uganda.
MORE ABOUT THE PROJECT
The project is led by the Johns Hopkins Center for Bioengineering Innovation and Design (CBID) in collaboration with Makerere’s Department of Biomedical Engineering and MUST researchers. Field learning tours have already been conducted at Mulago National Referral Hospital, Jinja, Mbarara, and Fort Portal Regional Referral Hospitals, with input from clinicians, technologists, and innovators in Uganda’s health ecosystem.
The Johns Hopkins team has conducted usability interviews with clinicians, laboratory technologists, and surgeons at multiple hospitals including Mulago, Jinja, Mbarara, and Fort Portal. They have also engaged with Uganda’s innovation ecosystem, including makerspaces and industry partners. It has been noted that the Ministry of Health together with Partners working on treatment of cancer has drafted the National Cancer Control Plan (NCCP) that is aimed at reducing incidence, morbidity and mortality through prevention and early treatment and palliative care. The Plan will give guide on health education, early detection, and diagnosis among others Special thanks go to the Center for Bioengineering Innovation and Design (CIBID) Johns Hopkins University for funding this field learning tour, Centre for Maternal Newborn and Child Health Research at School of Public health (Makerere University) for hosting the team, Departments of Bioengineering at Makerere University and Mbarara University of Science and Technology, Mulago pathology department and the Uganda cancer institute, Regional Referral hospitals of Jinja, Mbarara and Fort Portal among other General hospitals and Health center IVs visited for technical input.
Health
VectorCam Project; Makerere, Johns Hopkins, and MoH to Scale Up AI-Powered Malaria Surveillance across Uganda
On August 20, 2025, Makerere University School of Public Health (MakSPH) convened a timely workshop on Strengthening Equitable Partnerships in International Research Collaboration in Uganda. Held at the MakSPH Auditorium, the event brought together researchers, policymakers, and institutional leaders to reflect on how Uganda, and indeed the wider region, can engage more effectively and derive greater benefit from global research collaborations.
Delivering the keynote address, Prof. David Musoke Serwadda, a Professor Emeritus at Makerere University and a globally recognised HIV researcher and epidemiologist, urged a rethinking of how international research partnerships are structured. A former head of the Institute of Public Health (IPH) and later Dean of the School, serving between 2003 and 2009, Serwadda is also the founding director of the Rakai Health Sciences Programme (RHSP), which is one of Uganda’s most influential research initiatives on HIV. While acknowledging the many benefits Uganda has gained from global research collaborations, he cautioned that too many times, these partnerships remain transactional, shaped by donor priorities, bound to project cycles, and offering limited long-term value to local institutions once projects close.
Prof. Serwadda, himself a globally recognised and well-accomplished researcher, with over four decades of experience and numerous awards for his contributions to science and global health, observed that Ugandan partners are many times included in research projects for visibility rather than substance, often excluded from core roles such as Principal Investigators or from influencing agenda-setting, budget control, and authorship. “Partnerships are not an end in themselves; they exist to help us achieve mutually agreed objectives built on shared responsibility and reciprocal obligations. Too often, Southern institutions are brought into projects late, simply for optics. That is not equitable collaboration,” he insisted.
During his talk, he stressed that this imbalance undermines both research quality and sustainability, noting that normally, when local researchers are sidelined, studies often fail to align with national priorities or build capacity that endures. By contrast, partnerships that are grounded in mutual respect, fair resource sharing, co-design, and shared decision-making have the impact of producing knowledge that is globally relevant and locally impactful.
“Equity in partnerships is about fairness, ensuring that all partners, regardless of context, can contribute meaningfully. This also requires responsibility on our part in the Global South. We must insist on involvement from project conception, negotiate fair terms, and strengthen our own systems to manage collaborations effectively,” Prof. Serwadda advised, emphasising that strong institutions, clear strategy, agenda and objectives are key for local institutions to engage in mutually fair and beneficial research collaborations at the global and continental stage.
As Director and later Dean of MakSPH, Prof. David Serwadda spearheaded numerous research collaborations and attracted substantial grants that elevated the School and the University’s global standing. Today, MakSPH is recognised as Makerere University’s flagship unit for its wide-ranging partnerships and robust research management systems. Since its beginnings as a small Department of Preventive Medicine in 1954, through its transformation into the first Institute of Public Health in sub-Saharan Africa in 1975, its elevation to School status in 2007, and most recently its reinstatement as a standalone School with college status within Makerere University in January 2025, a status first granted in 2001, MakSPH has built a 70-year legacy of advancing public health through research, training, and policy engagement.
The School’s evolution, as often couched by its leadership, has been anchored on strategic and strong partnerships. These collaborations, be they local, regional or global, have driven health systems innovation, strengthened capacity, and informed policy, making partnerships the cornerstone of the School’s past achievements and future ambitions. At the celebration of the School’s 70th Anniversary, marked in December 2024, Makerere University Vice Chancellor Prof. Barnabas Nawangwe hailed MakSPH’s research output, community impact, and strong partnerships cultivated throughout the years. The Mak VC cited the School’s pioneering role in the HIV response led by Prof. Serwadda in the 1980s, the establishment of nutrition centres such as the Mwana Mugimu Unit at Mulago Hospital and across Uganda by the late Prof. John Kakitahi in the 1990s with support from Rotary International, and community projects like Kasangati Health Centre along Gayaza Road with support from the Rockefeller Foundation in the late 1950s, which advanced public education on healthy environments and wellness.
“The School of Public Health brings in almost half of all research grants at Makerere University, both in number and value, and these partnerships have been central to tackling Uganda’s public health challenges. From pioneering HIV/AIDS work that shaped global prevention strategies to interventions in maternal health, malaria, and infectious diseases, MakSPH has consistently combined academic excellence with community service. Its leadership during the COVID-19 pandemic further showed its ability to respond to national health emergencies with evidence-based solutions that directly benefit the people,” Prof. Nawangwe said with gratitude for the work done by the School through collaboration.
In 2024, the School had over 350 peer-reviewed publications in high-impact international journals as a result of this wide network and partnerships. MakSPH currently maintains a strong mix of North–South and South–South collaborations. Within the continent, the School is actively working in more than 25 countries, often partnering with multiple institutions within individual countries to advance research, capacity building, and policy influence. One such recent collaboration is the Partnership to Enhance Technical Support for Analytical Capacity and Data Use in Eastern & Southern Africa (PERSuADE) Project, funded by the Global Fund. Under PERSuADE, MakSPH, the prime grant recipient, hosted the secretariat led by Dean Prof. Rhoda Wanyenze as Principal Investigator, tasked with overall coordination across 12 countries, while a Steering Committee chaired by Prof. David Serwadda provided oversight.
PERSuADE was implemented in two phases between 2018 and 2023. The project brought together 12 universities and 12 Ministries of Health in East and Southern Africa to strengthen analytical capacity and promote data use in national health programmes, cascading skills to districts and lower facilities. In its second phase, the project trained over 1,500 health staff, including 934 at the sub-national level, in data analysis and use, and generated more than 80 analytical outputs on HIV, TB, and malaria. These informed National Strategic Plans in seven countries and improved programme strategies in all 12. Sixteen in-service staff from seven countries received specialised training in HIV key population surveillance, health information systems, and data use. The project also piloted the Maturity Index Model in five countries, helping ministries track progress in institutionalising data-driven decision-making.
In Uganda, the PERSuADE project was implemented in Kiboga, Buikwe, Kasanda, Mukono, and Mityana districts, selected by the Ministry of Health. According to the Principal Investigator, Prof. Rhoda Wanyenze, strengthening data analysis and use has greatly enhanced the capacity of Ministries of Health to deliver targeted interventions that directly benefit communities. She noted that improved analytical skills at national and subnational levels now enable ministries to identify disparities in HIV, TB, and malaria burdens, while district and facility health workers can use data to strengthen local service delivery. “With better data, districts can plan more efficiently, allocate medicines, and implement tailored prevention campaigns to address specific risks, raise awareness, and reduce new infections,” she said, emphasising the role of equitable collaboration as a key success factor in Uganda and across the continent for this partnership.
Indeed, during a learning visit to Uganda in September 2024, Dr. Estifanos Biru Shargie, Senior Specialist for Monitoring, Evaluation, and Country Analysis at the Global Fund, commended the PERSuADE Project for strengthening local capacity and fostering sustainable health system improvements through South-South partnerships among schools and ministries. “The impact has been significant. In Kiboga, I was impressed by how teams mapped gaps in services and addressed them over four years, using data to inform decisions and monitor progress. Working with Makerere University School of Public Health has been an honour. The School blends academic excellence with practical implementation, backed by strong financial management and a long-standing relationship with the Ministry of Health. Their coordination, networking, and efficiency have been exemplary,” Dr. Shargie said.
Another currently ongoing initiative at the School is the African Leadership and Management Training for Impact in Malaria Eradication (ALAMIME) program, led by MakSPH with ten participating institutions across nine malaria-endemic countries, funded by the Bill & Melinda Gates Foundation. Co-led by Prof. Elizeus Rutebemberwa and Prof. Dosithée Ngo Bebe, ALAMIME is cultivating the leadership Africa needs to defeat malaria by strengthening institutions, building capacity, and fostering regional networks. In 2024 alone, the program trained over 250 participants, nearly half women, from national malaria programs, ministries, and NGOs. Through structured training, alumni-led webinars, and cross-country exchanges, the program has demonstrated how equitable, multi-country partnerships translate investment into sustainable systems and shared momentum toward malaria elimination.
For nearly 15 years now, MakSPH has also hosted the NTU–Mak Partnership, a collaboration between Makerere University and Nottingham Trent University, first conceived in 2010, with Assoc. Prof. David Musoke and Prof. Linda Gibson as the Uganda and UK Co-Leads. One of the key reasons for the success of this partnership is equity, and it has since attracted over £1.4 million in grants, trained more than 900 Village Health Teams in Wakiso District, supported over 350 practitioners in antimicrobial stewardship, and facilitated exchanges for more than 200 students and faculty. It has also equipped community health workers to respond to non-communicable diseases, antimicrobial resistance, and the COVID-19 pandemic, while generating over 30 peer-reviewed publications and convening global platforms such as the first International Community Health Worker Symposium, held in Kampala in 2017.
Dr. Musoke, the Co-Principal Investigator for the project on strengthening equitable research collaborations in Uganda, described the NTU-Mak partnership as a model North–South partnership that has produced both joint scholarship and lasting institutional ties. He noted that its success has inspired wider collaborations, as the current project on equitable partnerships builds on this foundation. Emerging from a British Academy regional workshop in Nairobi in 2024, MakSPH extended its engagement to Mountains of the Moon University (MMU), Uganda Martyrs University (UMU), and the National Agricultural Research Organisation (NARO). Together with Nottingham Trent University, these institutions are now advancing reforms to embed equity in research partnerships across Uganda’s research ecosystem.
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