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.
Agriculture & Environment
Makerere Hosts Inaugural Falling Walls Lab Competition as Innovators Pitch Solutions to National Challenges
Students and researchers from Makerere University and other institutions pitched 12 innovations addressing challenges in healthcare, clean energy, agriculture, waste management and community resilience during the inaugural Falling Walls Lab Kampala, held at the School of Public Health Auditorium, Makerere University.
The competition brought together emerging innovators to present solutions to practical challenges through a three minute pitch, followed by questions from a panel of judges.
Modelled on the Falling Walls format that originated in Berlin, the event required each participant to identify a “wall” a problem or barrier, and demonstrate how their innovation seeks to break it down.
Mudhasi wins with newborn jaundice screening device
Andrew Mudhasi of Makerere University emerged as the overall winner with a score of 90 per cent for a low cost medical device designed to improve newborn jaundice screening across different skin tones.
Mudhasi explained that the device uses optical sensor technology and a skin tone targeting algorithm to provide a rapid reading, with the aim of helping nurses and clinicians identify jaundice more efficiently.
During questions from the jury, Mudhasi said the device had not yet been tested on actual babies but had undergone laboratory testing using simulated skin tones.
He reported an accuracy rate of 94 per cent when the device was compared with laboratory spectrophotometers.
The innovation is intended initially for use in clinics and hospitals, with Mudhasi saying the team is also considering a version that could eventually allow mothers to screen babies at home.
Mudhasi’s innovation has previously received recognition at the African Business Concept Challenge and the iF Design Student Award, according to his presentation.
Rhonda’s innovation tackles diaper waste
Rhoda John of the University of Nairobi emerged in second place with 89.6 per cent for an innovation addressing the problem of used diaper waste.
Under the theme “Breaking the wall of diaper waste and drug soils,” Rhonda explained that her team extracts sodium polyacrylate, the absorbent polymer found in diapers, and replaces the sodium with potassium.
The resulting potassium based superabsorbent material is designed to act as a “water battery” in soil by absorbing and retaining water for plants during dry periods.
John said testing showed a 99 per cent increase in germination and a 23 per cent increase in drought resistance.
The innovation also seeks to reduce the amount of used diapers ending up in landfills and the environmental effects associated with their decomposition.
During the question and answer session, John explained that her team was working with government environmental officials in Nairobi on a pilot collection system to address the challenge of gathering used diapers at scale.
Mahera takes third place with herbal peptic ulcer treatment
Stuart Mahera of Makerere University finished third with 86.2 per cent for a herbal formulation targeting peptic ulcers.
Presenting under the theme “Breaking the wall of Nature and Modern Medicine,” Mahera argued that conventional treatment for peptic ulcers can involve multiple medicines and may be associated with side effects and antimicrobial resistance.
His proposed formulation, MARAC capsules, is intended as a monotherapy, combining properties required for peptic-ulcer treatment in a single capsule.
Mahera said his team had carried out quality control work, including characterisation and dose quantification, and had conducted preclinical trials on laboratory mice.
He also told the jury that an application had been submitted to the National Drug Authority as the team awaits the next stage of the regulatory process.
According to Mahera, the proposed seven day treatment would cost about Shs21,000, compared with the existing 14 day treatment approach.
Innovators present solutions to practical challenges
The remaining presentations covered a wide range of challenges.
Esther Nakungu of Utamu University presented Agri-Track, a digital record keeping solution intended to improve visibility, accountability and management of farm operations and financial information.
Dr. Jimmy Chachiga, a Makerere University participant, presented a solar photovoltaic cooker with a heat storage system designed to provide a cleaner and more reliable cooking option during both sunny and non sunny periods.
His presentation focused on reducing dependence on biomass fuels and addressing the challenges associated with intermittent solar energy.
Abdul Noor Luttamaguzi, a PhD student and senior government fisheries officer, presented a mobile application aimed at helping fish farmers and extension officers report, track and manage disease outbreaks.
Henry Duke Tamale presented a herbal cream targeting antibiotic resistant biofilm infections associated with diabetic foot ulcers.
Marvin Seruwu proposed adapting existing near infrared brain monitoring technology to help detect extra-axial brain bleeds in health facilities where access to CT and MRI equipment is limited.
His proposal seeks to repurpose existing technology towards a diagnostic need that could be particularly important in settings where advanced imaging facilities are not readily available.
Kennedy Kisame presented a poultry alert and diagnosis system combining satellite weather information with computer vision disease detection. The proposed system could be accessed through a smartphone application, SMS or USSD, making it potentially usable by farmers with limited internet access.
Frank Atwiine proposed a solar powered mobile diagnostic van designed to bring ultrasound and other diagnostic services closer to rural communities.
Johnson Makmot, a software and blockchain developer, presented a platform that combines GPS tracking and blockchain-based tokens to incentivise and verify plastic-waste collection in Kampala.
Dr. Nelson Ndugu, from a partner university, presented an artificial intelligence tool designed to translate agricultural research publications into local Ugandan languages and generate voice notes for radio-based extension delivery.
The final presentation came from Dr. Juliet Akola, a Ugandan post doctoral researcher at Mangosuthu University of Technology in South Africa.
Akola presented a community digital resilience initiative focused on mapping risks in Kampala’s informal settlements, including flooding, fire, poor sanitation, waste management and inadequate infrastructure.
Her proposal seeks to combine local community knowledge with geographical information systems and link identified risks to action plans involving municipalities and other stakeholders.
Nawangwe calls for more investment in innovation
Closing the event, Prof. Nawangwe congratulated all the participants and described their presentations as an important beginning for Makerere University, Uganda and the wider region.
Drawing on his experience attending the Falling Walls conference in Berlin, the Vice Chancellor said initiatives of this nature are important because innovation will play a major role in determining the future of countries.
He encouraged participants to make their pitches more precise by clearly identifying the problem they are addressing, explaining their proposed solution and demonstrating what they have already achieved.
Prof. Nawangwe also welcomed the participation of innovators from other universities and countries, noting that the Kampala event had attracted participants beyond Makerere.
He thanked the Africa Office of the Falling Walls Foundation for its role in bringing the initiative to Makerere and encouraged continued support for innovation.
The Vice Chancellor further linked innovation to Uganda’s growing youth population and the need to develop home-grown solutions to address challenges such as youth unemployment.
The inaugural Falling Walls Lab Kampala ultimately provided a platform for innovators to move ideas beyond the classroom and laboratory and demonstrate how research, technology and creativity can be applied to challenges affecting communities.
| Position | Winner | Institution | Score |
| 1st | Andrew Mudhasi | Makerere University | 90% |
| 2nd | Rhoda John | University of Nairobi | 89.6% |
| 3rd | Stuart Mahera | Makerere University | 86.2% |
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