Reducing epilepsy stigma and improving care for adolescents and families in Uganda (AWE Change)
Official title: Epilepsy in Uganda: Clinical characterization and co-morbidities, their relation to stigma among adolescents and impact of a community-based engagement program (AWE Change project)
Funded at Makerere University College of Health Sciences · NIH-11184394 · Data updated 2026-11-12
This project works with people living with epilepsy in Uganda—especially adolescents—to understand related health problems and reduce stigma using community engagement and clinic-based support.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Makerere University College of Health Sciences NIH-funded |
| Lab location | 1 site (Kampala, Uganda) |
| Project start | September 17, 2021 |
| Project end | August 31, 2026 |
| Funding year | 2025 |
| Award (this year) | $504,932 |
| NIH project number | 5R01HD106277-05 |
| Project ID | NIH-11184394 on NIH RePORTER |
Who could benefit from this research
✓Could help
People living with epilepsy in the participating Ugandan communities—especially adolescents and their caregivers—who can attend local clinic visits and community engagement sessions.
✕Less likely to help
People without epilepsy, those living outside the study area, or those unable or unwilling to participate in local clinics and community activities are unlikely to benefit directly.
What this research studies
If I join, researchers will collect my medical history, record seizure patterns, and screen for other health problems like mental health issues and infections. They will ask about my experiences with stigma and how epilepsy affects school, work, and family life using interviews and surveys. The team will run community workshops and engagement activities (AWE Change) aimed at reducing discrimination and linking people to medicines and local care. Participants will be followed over time to see whether the program improves health, social inclusion, and access to treatment.
Why it matters
Potential benefit: If successful, the project could lower stigma, increase access to anti-seizure medications and support services, and improve quality of life for people with epilepsy in the participating communities.
How similar studies have gone: Community-based stigma-reduction and care-linkage programs have shown promise in parts of sub-Saharan Africa, but comprehensive, long-term clinical data specifically for Ugandan adolescents remain limited.
Where this research is happening
-
Makerere University College of Health Sciences
Kampala, Uganda Active
Researchers
- Principal investigator: Kakooza, Angelina Mwesige — Makerere University College of Health Sciences
- Study coordinator: Kakooza, Angelina Mwesige
Related research
Other NIH-funded projects on the same topics.
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Scaling Up Task-Shifted Epilepsy Care for Children in Africa
A study to help children with epilepsy in Africa get diagnosed and receive seizure care through trained community health workers.
-
Closed-loop control of interneuron timing to influence seizures and memory in epilepsy
A study tests a brain-quieting system that uses light to precisely time certain brain cells in epilepsy-prone mice to see if this can lessen seizures and improve memory.
-
Epilepsy Data Ecosystem: A Big-Data Sharing Platform for Better Care
A national effort to collect and share large, multi‑modal brain data from people with medication‑resistant epilepsy to speed discoveries and improve treatment options.
-
Exploring epilepsy genes in zebrafish to understand human brain seizures
A study in zebrafish will model human epilepsy genes to help explain how certain brain mutations contribute to seizures.
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New MRI tools to better plan pediatric epilepsy surgery
A new MRI-based approach helps doctors decide the best time to surgically remove brain tissue in children with difficult-to-control seizures.
-
Sahel Epilepsy Study: finding patterns in epilepsy in rural Africa and its links to genes
A plan to study epilepsy in rural Nigeria to discover how common it is, what factors affect risk, and how genetics may influence it, with results that could improve care for people with epilepsy.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.