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Ugandan sickle cell researchers keep pace with aging patients

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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
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.

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Makerere University’s Prof. Peter Waiswa Appointed to WHO Technical Working Group on Essential Child Health Services

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Prof. Peter Waiswa (C) with participants at the World Health Regional Summit on 29 April 2026 in Nairobi Kenya. Photo: MNCH. Makerere University Center of Excellence for Maternal, Newborn and Child Health (MNCH), based at the Makerere University School of Public Health in Kampala Uganda

Makerere University’s Professor Peter Waiswa has been appointed to the World Health Organization (WHO) Technical Working Group of Experts tasked with developing the Essential Child Health Services (ECHS) framework.

The appointment, communicated in an official letter dated October 21, 2026, and signed by Dr. Pascale Allotey, Director of WHO’s Department of Sexual, Reproductive, Maternal, Child, Adolescent and Ageing Health, runs until December 31, 2027.

The technical working group will support WHO in defining a core package of essential health services for newborns, older children and adolescents, alongside practical approaches for delivering these services effectively and equitably to improve their health and well-being.

As a member of the working group, Prof. Waiswa will contribute scientific and technical expertise to the development of the framework. His responsibilities will include participating in technical consultations, reviewing draft documents, providing written feedback and contributing to consensus-building on key technical issues.

The group is expected to hold approximately five online meetings between November 2026 and mid-2027. Members will serve in their individual capacities as independent experts rather than as representatives of their respective governments or institutions.

The appointment builds on Prof. Waiswa’s longstanding service and contributions to WHO. He previously served for seven years on WHO’s Strategic and Technical Advisory Group of Experts (STAGE) on Maternal, Newborn, Child and Adolescent Health and Nutrition, with his tenure concluding in June 2026.

Congratulations Prof. Peter Waiswa.

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Mak Staff Receive Prestigious International “Future of the Field” Recognition in Global Research Administration Class of 2026.

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Mr. Mordecai Tayebwa (L) and Ms. Bonny Tusiime(R)

Makerere University proudly celebrates the recognition of Mr. Mordecai Tayebwa, Senior Grants Manager, Makerere University Lung Institute and Ms. Bonny Tusiime, Grants and Contracts Officer, Makerere University College of Health of Sciences (MakCHS) as recipients of the prestigious Future of the Field Award of Society of Research Administrators International (SRAI), an international recognition that Honors emerging leaders making outstanding contributions to the advancement of research administration. This year’s ‘Future of the Field’ honorees were formally recognized at SRAI’s Annual Meeting held in Honolulu, Hawaii, USA in October, 2026.

The Future of the Field Award recognizes professionals who demonstrate exceptional leadership, innovation, and commitment to strengthening research management and administration. The award celebrates individuals whose work is shaping the future of the profession by improving research support systems, fostering collaboration, and advancing excellence in research administration.

At Makerere University, Mr. Tayebwa and Ms. Tusiime have played key roles in strengthening grants and contracts management, supporting researchers throughout the grant lifecycle, promoting compliance with sponsor requirements, and contributing to the development of sustainable research management systems. Their efforts have enhanced institutional capacity to attract, manage, and administer competitive research funding while ensuring accountability and excellence. Commenting on the recognition, the award recipients expressed their gratitude for the opportunity to contribute to the growth of research administration. “This recognition reflects not only our individual efforts but also the collaborative environment at  MakCHS and Makerere University. It inspires us to continue strengthening research administration and supporting researchers in generating impactful scientific discoveries that improve lives.” They said.

The achievement highlights the growing international recognition of research administration professionals in Africa and underscores Makerere University and MakCHS’s  general commitment to building strong research support systems that enable world-class research. This also reflects the institution’s investment in professional development and its dedication to advancing research excellence through effective grants management.

Commenting on the award, Dara C. Little, President, (SRAI) said “In a field as dynamic and rapidly evolving as research administration, the need for visionary,adaptable leaders have never been greater,” . “SRAI’s Future of the Field recipients represent the next generation of changemakers – those who will not only navigate complexity but shape the future of our profession. To embrace change, is to lead your innovation, resilience, and leadership are exactly what this moment demands. Rise to the opportunity and you will do great things!”

Makerere University congratulates Mr. Mordecai Tayebwa and Ms. Bonny Tusiime on this significant achievement and wishes them continued success as they contribute to shaping the future of research administration both regionally and globally

Zaam Ssali
Zaam Ssali

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Mayuge Study Finds NCD Risks Emerging in Adolescence, and Shows Early Action Can Help

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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.

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.
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.
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.
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.

John Okeya

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