Research

Goal: Evaluation of a community-based programme to both decrease onchocerciasis transmission with the probability of preventing children from developing onchocerciasis associated epilepsy (OAE) including nodding syndrome (NS); and using the same mechanism to provide treatment, care and rehabilitation for persons with epilepsy (PWE) and support for affected families in three onchocerciasis endemic regions affected by chronic conflict in South Sudan (Maridi, Mundri and Mvolo).

Target population: The entire population of onchocerciasis-endemic villages with a high prevalence of epilepsy including NS in Maridi, Mundri and Mvolo Counties, South Sudan.

Strategy: changing the current community directed approach to annual mass distribution of ivermectin to 6 monthly and vector control, establishment of community-epilepsy awareness programme, an uninterrupted supply of anti-epileptic drugs (AED),  a training programme for health workers on how to diagnose and treat epilepsy and associated morbidities, establish epilepsy treatment centres in each county, Build epilepsy peer support groups consisting of PWE and their carers at each study site, and   Develop a training programme for school teachers on how to work with children with epilepsy.

Expected outcome:  Dramatical reduction in onchocerciasis transmission with very few children will develop onchocerciasis associated epilepsy including nodding syndrome, decrease in epilepsy-related  school drop-outs and morbidity, increase in number of epileptic children returning back to the school, reduction of epilepsy associated stigma and reintegration of people with epilepsy and their families into the community, and provision of evidence-based recommendations on how to prevent, treat and care for persons with OAE and NS in chronic conflict settings.