Researchers at the Vanderbilt Institute for Global Health (VIGH) and Friends in Global Health Initiative Nigeria have received a federal grant to launch a five-year study, totaling $2.8 million, focused on the epidemiology and genomics of epilepsy in Africa’s Sahel region.
In this area, treatment gaps affect up to 96% of patients, leaving millions without care. The project is funded by the National Institute of Neurological Disorders and Stroke of the National Institutes of Health.
Edwin Trevathan, MD, MPH, professor of Pediatrics at Vanderbilt University Medical Center and holder of the Amos Christie Chair in Global Health, will serve as the grant’s project director.
His earlier collaboration with Nigerian colleagues led to the development of tools and protocols to assist trained community health workers in diagnosing epilepsy, laying the foundation for this new project focused on epilepsy epidemiology and genomics.
In partnership with Aminu Kano Teaching Hospital in Kano, Nigeria, Trevathan and Aminu Taura Abdullahi, MBBS, senior lecturer and consultant psychiatrist, will serve as principal investigators.
“The Sahel Epilepsy Epidemiology and Genomics Study (SEEG) will be the largest study of epilepsy epidemiology and genomics in a contiguous area in Africa, and one of the largest epilepsy epidemiology and genomics studies conducted worldwide,” said Trevathan. “SEEG builds upon our prior work and is made possible by our great management team in Nigeria and our superior data management team in Nigeria and at VIGH.”
SEEG will address critical gaps in knowledge regarding the genomic and potentially modifiable risk factors that contribute to the development of epilepsy in a region with high prevalence and few population-based studies. The study will screen between 60,000 and 100,000 people across the lifespan in a rural area of northern Nigeria.
Community volunteers trained in epilepsy screening and community health workers trained in epilepsy diagnosis and management will play a crucial role by using validated screening tools in both English and the local language, Hausa, to identify cases of epilepsy across all age groups. Researchers will then perform clinical evaluations including portable EEG-video systems. They will return to the same households annually to monitor new cases and determine incidence rates.
The study will enroll approximately 1,000 people diagnosed with epilepsy, along with about 1,500 individuals who do not have epilepsy to serve as controls. Case-control studies will investigate potentially preventable risk factors such as head trauma, HIV, cerebral malaria and parasitic infections. Researchers will conduct genome-wide association studies to identify genetic factors that may influence the risk of epilepsy in populations affected by HIV, malaria and other parasitic infections.
Currently, at least 80% of the at least 50 million people with epilepsy worldwide reside in low- and middle-income countries, such as Nigeria. The 2022 Global Action Plan on Epilepsy sets ambitious treatment goals for 2031, including ensuring 90% of patients are aware of their diagnosis, 80% have access to anti-seizure medications, and 70% achieve seizure control.
The SEEG project aims to generate essential data to enhance epilepsy care and epilepsy prevention in areas with high prevalence. It will also support primary prevention efforts and improve the understanding of genetic factors that elevate the risk of epilepsy.
