Dr. Sarah Kiguli of Makerere University leads the Fogarty-funded program: Enhancing Research capacity for Sickle Cell Disease and related NCDs across the Lifespan in Uganda (ENRICH).
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
Photo courtesy of 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
Photo courtesy of 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
Photo courtesy of Anita Arinda
Dr. Anita Arinda, PhD candidate
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.
Prof. David Guwatudde, Principal Investigator (centre), and Dr. Justine Bukenya with researchers and stakeholders at the ARISE-NUTRINT dissemination meeting in Iganga, 1 October 2026.
Adolescence is a consequential period for health, when diets, behaviours and other risks can form and persist into adulthood. In Mayuge District, new evidence from Makerere University School of Public Health is showing how some of these early vulnerabilities could contribute to the later risk of non-communicable diseases (NCDs), and what can change when interventions begin early.
The evidence comes from the ARISE-NUTRINT project, a three-year EU-funded study led by Prof. David Guwatudde and Dr. Justine Bukenya. The project examines health and behavioural risks among adolescents and young adults, with a particular focus on nutrition-related NCD risks, and tests interventions designed to improve nutrition fluency and diet quality.
The work comes against a substantial NCD burden in a country where 73.2% of the population is below 30. WHO estimates that NCDs accounted for 42.2% of deaths in Uganda in 2023, while the country’s latest national NCD risk-factor survey found significant risk factors persisting in the population, with little overall change from the previous survey in 2014. Together, the evidence strengthens the case for prevention much earlier in life.
“There is strong evidence from literature demonstrating that most behavioral NCD risk factors, including nutrition-related, are established during childhood, persisting into adulthood. This may lead to development of actual NCDs if such risks are not reversed early,” Prof. Guwatudde said.
The study, he explained, linked assessment of young people’s health risks with developing responses suited to their circumstances. Since enrolling 1,206 participants aged 10–24 in Mayuge District in March 2024, the team has conducted three annual rounds of data collection, with young people and local stakeholders also helping evaluate interventions to reduce the risks identified.
Prof. David Guwatudde (right) addresses stakeholders alongside the ARISE-NUTRINT study team in Iganga on 1 October 2026.
A problem that starts early
The findings, shared with community and district stakeholders in Iganga on October 1, 2026, show that some vulnerabilities were already evident at baseline. Nearly one in three participants had anaemia, 49% had low nutrition literacy, while about one in ten reported symptoms of anxiety and a similar proportion reported depressive symptoms.
Anaemia, a condition in which the blood does not have enough healthy red blood cells or haemoglobin to carry adequate oxygen around the body, was highest among the youngest participants. Overall, 375, or 31%, had anaemia, rising to 35.7 per cent among 10–14-year-olds, compared with 18.9% among those aged 15–19 and 10.6 per cent among young adults aged 20–24.
Nutrition presented another challenge. At baseline, 49% of participants had low nutrition literacy and 13% had poor overall diet quality. Low nutrition literacy was associated with more than four times the odds of poor diet quality.
Gaps also emerged in sexual and reproductive health knowledge and behaviour. About 14 per cent of participants did not know that HIV cannot be transmitted by sharing food with a person living with HIV, 10% believed a condom could be used more than once, and 13 per cent did not know pregnancy could occur during first sexual intercourse. Among 168 participants who reported having had sex, more than half reported using no method to prevent pregnancy during their first or most recent sexual intercourse.
Mental health findings added another dimension. Anxiety symptoms were reported by 10 per cent of participants, depressive symptoms by 9.5% and loneliness by 6.3 per cent. Among 534 participants aged 13–24 assessed for suicidal ideation, 1.9% reported suicidal thoughts.
Together, the baseline findings show that vulnerabilities extended beyond any single health issue. For nutrition, the study went further to examine what shaped everyday food choices and whether those influences could be changed.
Nutrition literacy goes beyond knowing which foods are healthy. It includes understanding nutrition information and applying it to everyday choices. The study found those choices were also shaped by parents, peers, food vendors, culture, prices, seasons, and what was available locally. Improving diets, therefore, required reaching beyond individual knowledge to the households and communities where food choices are made.
What early action changed
The baseline evidence informed the Adolescent Nutrition Fluency Intervention. Working with adolescents and young adults, caregivers, Community Health Workers (CHWs), district teams and other stakeholders, the project adapted nutrition messages to local foods, language and household realities. Ten trained CHWs delivered nine monthly household sessions covering balanced diets, physical activity, vitamins and minerals, meal planning and anaemia prevention.
The household approach reached young people in and out of school. The nutrition literacy, diet-quality and intervention analyses form part of the PhD research of Mr. Thomas Buyinza, supported through ARISE-NUTRINT. At endline, participants who received the sessions recorded higher nutrition literacy and overall diet-quality scores.
“The improvement in nutrition literacy and diet quality suggests that practical education, grounded in local foods and household realities, can support healthier choices among adolescents and young adults. In addition, involving parents and caregivers is important because they influence what families buy, prepare, and eat,” Dr. Bukenya said.
She stressed that nutrition education needed to be complemented by better access to affordable, nutritious foods. Dr. Bukenya also called for continued follow-up, including the use of nutrition and dietary data from DHIS2, to assess whether improvements were maintained and guide district planning.
Dr. Justine Bukenya emphasises family involvement in nutrition education and access to affordable, nutritious foods during the ARISE-NUTRINT dissemination meeting in Iganga on 1 October 2026.
Changes in other outcomes were mixed. Participants reporting no physical activity fell from 22.6% to 7.4%, while those active on four to seven days a week increased from 46% to 54.8%. But activity duration did not improve: those reporting more than 60 minutes a day declined from 28.2% to 21.1%. Underweight fell modestly from 6.2% to 5%, while overweight and obesity did not change significantly.
Anaemia recorded the largest change, falling from 31.1% before the intervention to 9.9% afterwards. During the intervention period, participants received weekly iron and folic acid supplementation and deworming alongside nutrition education on iron-rich foods, dietary diversity and practices that improve iron absorption.
Illustration of the ARISE-NUTRINT household approach: ten trained community health workers delivered nine monthly nutrition education sessions to adolescents and young adults, involving parents and caregivers. AI-generated illustration.
Mayuge District’s Assistant District Health Officer, Ms. Elizabeth Kawaala, said the findings reflected problems recognised locally and highlighted the need for a response involving families and other stakeholders.
“There is a serious challenge that needs to be tackled with many stakeholders, with parents at the centre because these are children. We also learnt that many parents, I think, lack the skills to communicate with their adolescents,” she said.
Mayuge District’s Assistant District Health Officer, Ms. Elizabeth Kawaala, speaks during the dissemination of ARISE-NUTRINT study findings in Iganga on 1 October 2026.
She said the findings had been shared with colleagues and described integrating health education and sensitisation into services. She also called for departments to use the evidence when planning activities in their workplans.
Beyond Mayuge
Seen alongside Uganda’s 2023 STEPS survey, the Mayuge findings add an earlier-life dimension to the national evidence. Makerere University School of Public Health contributed to both studies, with Prof. Guwatudde contributing to the national STEPS survey and now leading ARISE-NUTRINT. While STEPS found significant NCD risk factors persisting among adults, ARISE-NUTRINT shows that some behaviours and vulnerabilities relevant to later NCD risk are already evident during adolescence and young adulthood. The Mayuge research goes further by testing what can change when interventions begin during this period.
The findings leave Mayuge with more than a measure of the problem. They show where vulnerabilities are emerging, what changed when interventions were introduced and where challenges remain. For ARISE-NUTRINT, the evidence now turns attention to which approaches can be sustained and how lessons from Mayuge can inform efforts to support healthier transitions from adolescence into adulthood.
Makerere University School of Public Health invites applications for a PhD fellowship under the Wellcome Trust-supported NETOMA study, which examines the coexistence of health worker shortages and unemployment among qualified health professionals in Africa.
The successful candidate will undertake doctoral research involving ethnographic fieldwork and qualitative analysis of health workers’ professional identities, employment experiences and livelihoods. Applicants should hold a Master’s degree in Anthropology, Sociology, Development Studies, Political Economy or a closely related discipline, with training in qualitative research methods.
Through a European Union (EU) funded initiative, Makerere University and Mulago Hospital are hosting a German oncology reconstruction specialist Professor Dr. Thiha AUNG. AUNG is a surgeon, trainer at the Deggendorf Institute of Technology (THD), and researcher on cancer from the Deggendorf Institute of Technology (DIT), Germany.
With his international expertise in oncology and medical management roles at his home institution, his visit is a valuable addition to Uganda’s capacity building efforts in medical advancement.
Prof. Aung who arrived in Uganda in late September 2026 and has since then conducted free identified patient specialised surgeries and training for locals. These are expected to span two weeks. For the period, his service intersects medical expertise and humanitarian efforts.
This is not Prof. Aung’s first time in the country; his first major visit was in 2023, when he performed life-changing free surgeries on early patients. He then made medical history in June 2024 when he arrived to perform Africa’s first-ever lymph node transplant at Mulago Hospital.
It was against this background that the Makerere Public Relations Office engaged him in an exclusive interview to share his philosophy on medical service, his experiences in oncology reconstruction, and his unwavering belief that passion and dedication rather than just resources are the true drivers of sustainable medical progress.
Transforming Lives Through Oncology Reconstruction
At the heart of his mission through the ERASMUS – Oncology/Lymphedema project, is the treatment of lymphedema, a condition often referred to as elephantiasis.
In Europe, such surgeries can cost between 80,000 and 100,000 euros, making them inaccessible to many.
Thankfully, Professor and his team, including some of his post graduate students like Anna Friedrich (B.Sc) and Sophia Waser (B.Sc., PA) from the Institute of Medical Science and Engineering, have once again brought this specialised care to Uganda pro bono.
Professor AUNG with the article author.
He highlights the story of a teacher who, after receiving surgery, regained her quality of life and returned to the classroom. For him, the impact is exponential. “You change one life, but this person changes a lot in the community.”
This shift from individual surgery to the long-term wellbeing of the community, reinforces the local impact of these services.
Professor AUNG’s Personal Conviction
The professor confessed that inherently, he commands himself that beyond knowledge, true progress is driven by passion and will rather than resources.
He does not agree with those that think money and resources are the sole prerequisite for change in the medical world, stating, “you cannot change with money only.” Rather, he upholds the importance of personal decision and commitment.
When discussing the challenges of working in resource-limited settings, he maintains a simple, direct explanation “it’s always beyond the money.”
Ultimately, the Professor believes that if he can provide the spark, his students and patients can carry through with the same flame for significant change.
Motivation to Serve in Uganda
When asked about his inspiration for entering the field and now volunteering to work in Uganda, he explained that his primary goal was always to serve others. “That’s why I finished my medical school to help as many people as possible with my skills.”
Professor AUNG gestures during the interview.
He views his medical expertise not as a tool for the privileged, but as a universal resource., “People are all the same, their anatomy is the same. So, I can help all these people pretty well,” Prof AUNG remarked.
His approach is motivated by a pay it forward dogma where treating a single patient creates a broader societal benefit. He illustrates this through his work with patients who, after surgery, are able to return to their professions like the teacher earlier mentioned.
Tips for Medical Professionals working in Uganda
As a foundation for professional growth, the Professor advised medical professionals working in Uganda to prioritise genuine interest in their work because he believes it is “the most important…” for “if you are interested, you will go far in the profession.”
He further reinforced the human capacity point, noting, “no matter what kind of equipment you have… it all depends on the people operating them and the patient.”
Professor AUNG concluded by encouraging doctors to overcome resource fears through action, stating, “If you want to create impact or change, you do.”
Dr. AUNG is part of the Lymphoedema Warriors Association (LWAU) in Uganda. He describes it as a grassroots organisation and commends them for “leveling the grond”. He reiterated his commitment to work with the organisation in reviewing patient reports to determine the best course of treatment.