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Principal Investigator: Richard Lako, Ministry of Health, Government of South Sudan & Jane Carter, Amref Health Africa


The study will evaluate a community-based programme to protect children from developing epilepsy and improve the treatment and care of persons with epilepsy in onchocerciasis (‘river blindness’) endemic regions in South Sudan

Expected Outcomes

The research should fill a significant evidence gap concerning the management of people with epilepsy in remote and conflict affected settings, a highly neglected and stigmatised condition in lower income settings. The study will also improve knowledge of community-based intervention methods which can apply to other remote or humanitarian contexts. Finally, the study will increase knowledge concerning the association between onchocerciasis-related epilepsy and nodding syndrome.

Richard Lako

Principal Investigator, Government of South Sudan

Nodding syndrome is another mystery for the people of South Sudan, the aetiology remains unknown, the magnitude of the problem and the treatment protocol are yet to be established and developed respectively but on other hand the relatives of the affected children cannot afford waiting for psychosocial support.

Jane Carter

Principal Investigator, Amref Health Africa

This study will provide the evidence needed to halt the epidemic of epilepsy that is causing such misery to the people of South Sudan as well as affecting the economic growth of the country

Robert Colebunders

Professor of Infectious Diseases, University of Antwerp

With this project we will identify new strategies to sustainably improve the prevention and management of epilepsy in onchocerciasis endemic regions.

Research Methodology (summary)

The current community directed approach to annual mass distribution of ivermectin will be changed to 6 monthly distribution and vector control, in one of the 3 study sites. The impact will be measured over the life of the project in terms of transmission of onchocerciasis and its effect on the incidence of nodding syndrome and epilepsy. Parallel studies will use the same community structures to identify and manage the many cases of epilepsy, and the impact on persons with epilepsy and their families, as well as school attendance.

Children in Mvolo, South Sudan
Children in Mvolo playing in the river at a blackfly (the transmitter of onchocerciasis) breeding site

Related Resources

Peer Reviewed Mental Health and Psychosocial Support

Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan: A pilot descriptive study

Peer Reviewed Mental Health and Psychosocial Support

The Role of the Maridi Dam in Causing an Onchocerciasis-Associated Epilepsy Epidemic in Maridi, South Sudan: An Epidemiological, Sociological, and Entomological Study

Latest Updates

Poster Submitted to ECTMIH

Sept 2021

View the poster submitted to the European Congress on Tropical Medicine and International Health on the effect of the community-based control programme.


Publication: Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan

Aug 2020

Article published in Seizure - European Journal of Epilepsy


Publication: The Role of the Maridi Dam in Causing an Onchocerciasis-Associated Epilepsy Epidemic in Maridi, South Sudan

Apr 2020

Article published in Pathogens


Blog published

Mar 2020

Robert Colebunders reflects on the situation in Mvolo, South Sudan in this blog.


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