Health
Genetics & Genomics Research Dissemination; Makerere Bioethicists Emphasize the Importance of Community Engagement
By Joseph Odoi
As Genetics research continues growing in Uganda, Bioethicists from Makerere University College of Health Sciences have stressed the importance of community engagement, genetic counselling and Public sensitization when conducting Genetics research in Uganda.
These recommendations were made at a research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.
While presenting findings of the ELSI-UG project titled “Ethical and social issues in informed consentprocesses in African genomic research”, the Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki from College of Health Sciences, Makerere University in a special way welcomed participants to the dissemination. He noted that involving communities in genetics and genomics research is very important when it comes to enhancing the understanding of genetics and genomic information by the general public.
‘’There has been an exponential increase in genetics and genomic research in the last two decades.
However, this field of research is complex and is poorly understood by various research stakeholders. One way of enhancing understanding of genetics and genomic information by the general public is through community engagement. It is therefore crucial that communities are meaningfully involved in research processes right from conception. Community engagement provides a two-way communication channel through which researchers gain better understanding of community priorities, preferences, traditions, practices, and cultural sensitivities.’’ explained Prof. Mwaka.
He equally highlighted the need for translation of scientific language into local languages, genetic counsellors and consent in Genetics research adding that community engagement is crucial in building equitable research collaborations and trust between researchers and research communities.
Genetic and Genomics
According to National Institute of General Medical Sciences, Genetics is the scientific study of genes and how certain qualities, conditions or traits are passed from parents to their off springs. Genomics on the other hand involves using information about genes to: identify genetic disorders including future diseases so that doctors tailor treatment for individuals.
In same spirit, Dr. Moses Ochan, the Vice Chairperson of the Makerere University Research and Ethics Committee stressed the importance of sensitization of communities and researchers before any study is undertaken. According to him, sensitization enables communities understand the advantages and disadvantages of participating in a study thus making informed decisions.
In this United States National Institutes of Health funded study that sought to explore the knowledge,perceptions and experiences of stakeholders; researchers, bioethicists, REC members, research participants and caregivers/guardians on the informed consent process, and the ethical, legal and social implication of genomic research, 243 protocols were analyzed involving both local and international researchers
Findings
Return of individual genetic results to research participants
- Of 122 parents/caregivers of adolescents in the study, 77.1 % expressed the desire to receive all results of their children’s genetic/genomic results.
- 71.3 % of parents/caregivers agreed that children should be able to take part in research testing for genetic conditions that begin during childhood, even if there is no treatment that can alter the course of the condition
- 85.3 % of parents/ caregivers expressed the desire to know genetic research results about children to see if they are more likely to get a disease in the future.
- 71.3 % of parents/ caregivers agreed that Children should be able to take part in research testing for genetic conditions for which there is a treatment that begins during childhood that can alter the course of the condition
- 62.3 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that start in adulthood and have no treatment that can alter the course
- 89.4 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that will arise in their adult years, only if there is treatment or prevention that should begin in childhood
On the most important issues parents should consider in deciding whether or not to get genetic research results, 81.2% cited distress knowing that there are potential problems for other family members. Additionally, 45.0 % of parents and caregivers noted that receiving their child’s genetic results might worry their family; and 27.8% worried about stigma and discrimination
To address this, 69.2 % of parents and care givers said genetic counselling should be offered prior to a sample being taken to do genetic research
On perceptions on returning individual results of genomic research, parents and caregivers indicated that It is the researchers’ moral obligation to return clinically significant results; as such, genetic results should be communicated to them by the study doctor. Most parents preferred being informed first before involving the children; and some mothers expressed the desire to exclude the child’s father from these discussions until they (mothers) have understood the implications of the results in question.
On the role of children in making decision makings on whether to regarding return of genetic results or not, there was no consensus on the ideal age for disclosure of results. Some parents and caregivers pointed out that involvement of children in these discussions should depend on child’s character, level of understanding and ability to cope with the implications..
On handling findings that have familial implications, there were mixed feelings about involving other family members. Parents, especially mothers expressed fear of attribution. They thus suggested that the biological parents of the child should be the first ones to receive these results and then decide whether to involve other family members.
On the perceived challenges to return of results, parents and caregivers cited protracted delays in communicating genetics/genomics results; difficulty in tracing the child’s family, especially when the parents die and they are being cared for by other caregivers; risks of knowing unpleasant findings and paternity disputes.
Parents and caregivers offered several suggestions for the safe return of results of paediatric genomic research and these included the need to organize peer support and sensitization activities for adolescents participating in genetic studies; feedback of results should be done by a multidisciplinary team comprising of clinicians, genetic counsellors, the child and parents. All concurred that other family members should be involved at a later stage.
Informed consent and sharing of biological samples in collaborative genomic research and biobanking
On consent to future use of samples, 88.8% of the 187 researchers that participated in the study indicated that there is need to provide donors with the option to consent. 62% indicated that informed consent forms should include multiple options regarding the types and conditions of future research for which the samples may be used (tiered consent). 6.2% said that participants should only consent for the current study, and any future studies on the stored samples would require re-consent. However, the majority of researchers felt that the need to reconsent places an unacceptable burden on the researchers (62%) and is prohibitively costly (59.4%)
On informed consent experiences and practices, it was found that most principal investigators (12/15) were not well conversant with the informed consent procedures of their respective studies because they delegate this to study coordinators and nurses/nurse counsellors. Most nurses/nurse counsellors lacked basic knowledge and understanding of genetics, including the risks of genetic research.
On Information disclosure, researchers noted that genetic research is complex and oftentimes research participants do not adequately understand the information disclosed them during the consenting process. They thus recommended the use of an iterative approach that encourages consultation with family and/or people research participants trust, use of simple language, use of visual aids and other media, and objective assessment of comprehension. The also reiterated the need for translating informed consent documents into local languages and the use of peer educators. Researchers emphasized the role of community engagement in community education and sensitization, ensuring that researchers respect local cultural values and beliefs, and dispelling of superstitions and misinformation.
- The perceived challenges to the informed consent process included, the poor quality and inaccuracy of translations of ICF into local languages, inadequate understanding of informed consent, limited understanding of genetics by communities and some research team members, lack of professional genetic counselling services in Uganda, and mistrust of foreign collaborators.
On Export of human biological materials (HBM), researchers had a positive attitude towards the export of samples and expressed a desire for collaborative partnerships in genetics/genomic research and bio banking that are characterized by mutual respect and equity. However, they raised several concerns:
- They seem not to be well conversant with the guidance provided by the national ethics guidelines on bio banking and
- They all concurred that material transfer agreements (MTA) are key in the transfer of human biological materials across the national borders. However, they surmised that these MTA are unfair and tend to favour international Collaborators. They felt that local researchers and research institutions are not empowered enough to bargain favorably during MTA negotiations. They also indicated that the national ethics guidelines are vague on role of RECs in MTA and data sharing agreement development. Furthermore, they indicated that Uganda lacks appropriate enabling ethical and legal frameworks to protect the interests of local scientists and research institutions
- On sharing of the benefits of research, the researchers felt the ground was not leveled and there was neither equity nor fairness in sharing of GBR benefits in international collaborative research. They attributed this to the lack of scientific integrity and questionable research practices by collaborating researchers, lack of effective communication between collaborating partners, denial of access to shared data and samples by Northern collaborators, and felt that the oversight function of UNCST during MTA implementation is limited.
To address the issues at hand around genetics and genomics research, they made the following recommendations;
Recommendations to enhance comprehension of informed consent for genetic/genomic research and biobanking
- Escalating community engagement: to sensitize the general public and educate them on genetics research and its implications
- Iterative approach to informed consent where participants are given ample time to read/be read to consent information, ask questions, make consultations with family and trusted persons
- Encouraging the use of simple language and various media during information disclosure.
- There is need for harmonization of translations. A dictionary of translated key scientific and medical terms/concepts in research and clinical care in local languages should be developed
- Develop specific national guidelines for genetic and genomic research in Uganda.
- Research ethics committees should be trained in the basics of genetic research in order to ensure that they appreciate the ELSI and are competent enough to review genetic research.
- The use of checklists for assessing understanding of consent should become mandatory and should also be included in the national ethics guidelines.
- All stakeholders should read and understand the available national and international guidelines, policies, and regulations pertaining to genetics/genomic research and bio banking before negotiating Material transfer agreements.
- Research ethics committees should be empowered to review and monitor the execution of MTAs during research implementation, and this should be clearly stipulated in the national ethics guidelines.
- The national research regulators and individual institutions should join forces and devise mechanisms for tracking and monitoring the use of exported HBM and data.
- Encouraging meaningful involvement of communities in Material transfer agreements negotiations, particularly regarding sharing of the benefits of research.
- There should be capacity building for clinical genetics, particularly clinical geneticists and professional genetic counsellors
- Community engagement activities should be scaled up to prepare communities for the return of genetic research results as and when they are available
More about the Project
This project explored the knowledge, perceptions and experiences of stakeholders on the informed consent process, and the ethical, legal and social implication of genomic research. The goal of the project was to contribute to a better understanding of the ethical legal and societal issues associated with genomic research in low resource settings. The study employed both quantitative and qualitative methods of data collection and analysis. Prospective evaluation was done using questionnaire surveys; focus group discussions; in-depth interviews; direct observation of informed consent processes; and assessment of the quality of informed consent
This study was funded by United States National Institutes of Health through The Human Heredity and
Health in Africa (H3Africa) initiative which is spearheading bio banking and genomics research in Africa for Africa.
The study was conducted between November 2018 to 2022 by a team of researchers led by Associate Prof. Erisa Mwaka as Principal Investigator.
Research team:
- Associate Prof. Erisa Mwaka
- Dr. Ian Munabi
- Assoc. Prof. Joseph Ochieng
- Dr. Janet Nakigudde
- Prof. Nelson Sewankambo
Four Makerere University School of Public Health (MakSPH) faculty have been inducted for the 2024 Uganda National Academy of Sciences (UNAS) fellowship, a preeminent nation’s most respected scientific bodies. This is the first time MakSPH is scooping a large number of faculty fellows, which was the highest for a single institution. This prestigious honor was awarded on Friday, November 1, 2024, at Four Points by Sheraton Kampala, Uganda.
The recipients are;
⦿ Professor David Guwatudde, a Professor of Epidemiology and Biostatistics at the MakSPH where he has been teaching for over 32 years. In the last decade, Dr. Guwatudde’s research interest has been on characterising the epidemiology, evaluattion and effectiveness of appropriate interventions for prevention and control of selected non-communicable diseases (NCD) especially diabetes and hypertension.
⦿ Dr. Fredrick Edward Makumbi, an Associate Professor of Biostatistics at MakSPH in the Department of Epidemiology and Biostatistics. A seasoned public health professional in Uganda, he is also a Gates Fellow. Through his expertise in population health and the evaluation of public health interventions, Dr. Makumbi has generated significant evidence that impacts the field. He has published over 300 journal articles and leads the PMA project, which focuses on evaluating schistosomiasis and family planning initiatives in Uganda.
⦿ Dr. David Musoke, a Senior Lecturer in the Department of Disease Control and Environmental Health at MakSPH. He serves as the Chair of the Grants and Research Capacity Building Committee at MakSPH and is the President Elect of the International Federation of Environmental Health (IFEH). A graduate of Makerere University, his research interests include environmental health, malaria prevention and community health. He organized the first International Community Health Workers symposium which was held in Uganda, and is an academic editor and reviewer for several journals.
⦿ Dr. Victoria Nankabirwa, an experienced clinical researcher and Lecturer in the Department of Epidemiology and Biostatistics at MakSPH. She holds a PhD from the University of Bergen and is also a member of the WHO Immunization and Vaccine-related Implementation Research (IVIR) Advisory Committee. Her key interests include mother and child outcomes, particularly survival and the impact of immunization.
UNAS is an independent, non-profit, and non-political organization, established and founded in October 2000 to provide Uganda with credible, balanced, and evidence-driven guidance on matters of science and development. Membership is drawn from distinguished scientists and scholars who have made significant, lifelong contributions across diverse fields, including natural and social sciences, arts, and humanities.
The UNAS Fellowship remains one of the nation’s most respected scientific bodies, with over 200 members working collaboratively in interdisciplinary and transdisciplinary fields to address Uganda’s challenges through science and innovation.
Every year, Fellows of the Uganda National Academy of Sciences (FUNAS) have an opportunity to nominate potential fellows into the academy based on their merit, impact and contribution of the world of Science. A nomination stands substantive once it is seconded by another FUNAS, after which the nominees go through a rigorous selection process by a highly competent committee of scholars in the academy.
Once selected and inducted, fellows in the academy devote their time on honorific activities and service provision through arbitrating on contentious national debates such as whether to provide free social services to refugees and whether to use DDT to control Malaria. Since inception on October 20, 2000, the UNAS has distinguished itself as a premier honorific society for eminent scientists in Uganda. It leverages on the expertise and stature of its members to provide pro bono evidence-informed advice to government and Ugandans on science, technology, innovation and sustainable development.
Dr. David Serwadda, an Exemplar Scholar of Makerere University who this year received the prestigious Professor Emeritus title presented the new fellows to the UNAS convention. He described Dr. Nankabirwa as a prolific researcher, with over 80 publications in peer-reviewed journals and an impressive funding portfolio that includes a number of highly competitive research grants.
On her part, Dr. Victoria Nankabirwa said she was grateful for the recognition and pledged to uphold UNAS values.
“I am very thankful for this recognition, and as I reflect on the journey that has brought me to this point, I am reminded that this is not the result of solitary work but of shared aspirations, collaborations, and partnerships. As such, I am very thankful to my nominators and seconders, Prof. David Serwadda and Prof. Rhoda Wanyenze, as well as to my colleagues, my students, and my family, represented by my mum. To these people and to you, I extend my deepest gratitude. I pledge to uphold the academy’s values, advocate for science-driven policies, and mentor future generations. I will work as hard as I can within this FUNAS,” said Dr. Nankabirwa.
Dr. Fredrick Edward Makumbi expressed his gratitude and commitment during his recent induction as a fellow of the Uganda National Academy of Sciences (FUNAS). “I am delighted to have been nominated and accepted as a FUNAS. I am truly appreciative and acknowledge the support of all those who have helped me, from my family to my teachers and colleagues—many of whom are here today. They have supported me and brought me to this great podium. I pledge to continue working, supporting, and promoting the health and well-being of the people of Uganda and beyond through science, as well as mentoring others to ensure a sustainable generation that can uphold the health and well-being of Uganda and beyond. I am glad to be here, and thank you very much,” Dr. Makumbi stated.
Dr. David Musoke is a promising researcher and Senior Lecturer in the Department of Disease Control and Environmental Health at Makerere University’s School of Public Health. He serves as the Chair of the Grants and Research Capacity Building Committee and is the President Elect of the International Federation of Environmental Health (IFEH).
“I am really delighted and humbled to be joining this elite class of academics and scholars as a fellow of UNAS. It is an honor to join many of my mentors from over the years, including my very own father, who is also a fellow of UNAS and is here today, Prof. Miph Musoke. I wish to thank my family—my parents, wife, and children—for all their support, as well as the research teams we have worked with,” said Dr. David Musoke.
Adding that; “I also extend my gratitude to my mentors from the university, Professor David Serwadda and Professor Rhoda Wanyenze, for nominating me, along with all the others who have contributed throughout this journey, including funders, collaborators, the community, and everyone else we work with. I look forward to serving in this capacity and upholding the goals and aims of UNAS, especially in the field of Environmental Health and Community Health.”
Professor Guwatudde, a lead investigator in two national surveys assessing non-communicable disease (NCD) risk factors in his country—first in 2014 and again in 2023—expressed his commitment to tackling NCDs as he was recognized by the Uganda National Academy of Sciences (UNAS).
“I would like to thank the UNAS council, the secretariat, and all members for accepting me as a member,” Prof. Guwatudde said.
“I pledge to contribute in the area of non-communicable diseases. We have conducted extensive research in this country, giving us a clear picture of the NCD burden, a reality that affects us all. I would be glad to share this insight with fellow members,” added Guwatudde.
National academies worldwide provide neutral platforms for experts across disciplines to tackle societal challenges and clarify emerging issues in science, technology, and policy. These institutions play a crucial role in preparing for and responding to global threats such as pandemics. Since its inception, the Uganda National Academy of Sciences (UNAS) has been led by four presidents: Prof. Paul Mugambi (2000-2014), Prof. Nelson Sewankambo (2014-2019), Prof. Peter Mugyenyi (2019-2022), and, since October 2022, Prof. Grace Bantebya-Kyomuhendo, a Professor of Women and Gender Studies at Makerere University—the first female head of the academy.
Prof. Bantebya extended her congratulations to the newly inducted fellows. She emphasized the responsibilities UNAS fellows carry, including upholding the academy’s constitution and contributing to its vision, mission, and objectives. “Our fellows play a critical role in advancing the academy’s goals, and their dedication is vital to our impact on science and policy,” Prof. Bantebya stated.
“Remain academically active. Please listen to that. In meaningful pursuit of academic excellence in your respective areas of expertise. Do not say that now that you have become a fellow, you will stop being academically active. We expect you to continue,” she emphasised.
She also called on the fellows to actively participate in the academy’s conventions, consensus-building efforts, and other activities. Prof. Bantebya emphasized the importance of consensus studies to the academy’s mission, urging fellows to make themselves available when called upon.
“Ensure high standards of conduct based on national and international best practices. We expect you to maintain and ensure high standards yourselves and foster good relations among members as well as with the academy, the general science community, and the public. You also need to meet all the obligations as a fellow of UNAS, whether financial or otherwise, as stipulated,” the Academy President said
A fellow may lose their membership in the academy if they act against the UNAS constitution or bring disrepute to its goals, name, or vision. Membership can also be terminated if a member is convicted by a competent court or authority of a felony or serious crime, or if they are declared bankrupt or of unsound mind.
UNAS’s mission is to foster the welfare and prosperity of the Ugandan people by generating, sharing, and utilizing robust knowledge and insights to deliver independent, merit-based scientific counsel to government and society. As part of the global scientific community, UNAS maintains strong ties with the Network of African Science Academies (NASAC), Network of Science Academies in Islamic Countries (NASIC), the U.S. National Academies, IAP, and TWAS.
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.
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