South Sudan Nodding Syndrome Study: A study into the epidemiology, aetiology and outcome of nodding syndrome in South Sudan.

Background: Nodding syndrome (NS) is a life threatening neurological disorder, currently affecting an increasing number of children between 5 and 15 years in South Sudan, Northern Uganda and Southern Tanzania. NS is characterized by head-bobbing spells often followed by other types of seizures, developmental retardation and growth faltering. In the affected regions, NS is becoming a major public health problem with high morbidity and mortality rates and with severe social-economic implications. Despite detailed investigations in a limited number of Ugandan children, the aetiology and pathogenesis of NS remains unknown. Aside from questions regarding the aetiology, questions regarding the disease incidence, prevalence and long-term course remain outstanding. Proposed study: It is proposed to conduct an integrate program combining a case- control design with a detailed descriptive study using a phased approach. In the first phase a pathogen discovery programme will be applied on a limited number of NS patients and a group of controls using state of the art next generation sequencing and microarray-based methods on samples obtained from children and black flies. The focus of the second phase of the study will depend, in part, on the outcome of first phase: If a possible pathogen is identified the focus in the second phase will be on further identification of this pathogen. If no pathogen is identified, a detailed descriptive aetiology studies will be started using a case- control design and investigating all possible aetiologies previously indicated. Irrespective of the outcome of phase 1, in the second phase a surveillance study will also be started of all NS cases in the four most affected counties of South Sudan, next to a long term follow up of a selected group of NS cases and controls. This 3 years program will be conducted in close collaboration with South Sudanese, Dutch and Belgium NS and paediatric research experts and will be built on existing NS research and support activities already in place in South Sudan. Expected outcome: There is a significant chance that the true aetiology and the risk factors for NS will be identified and that the NS epidemiology in South Sudan will be clarified with respect to incidence, prevalence and disease progression. In addition, the study will create a platform for treatment intervention studies and will inform local health authorities how to improve their disease management and prevention strategies.

Keywords:SOUTH SUDAN, NODDING SYNDROME

Disciplines:Public health care, Public health sciences, Public health services

Project type:Collaboration project