Nodding Syndrome: a trans-disciplinary approach to identify the cause and decrease the incidence of river epilepsy (NSETHIO)


Nodding syndrome (NS) is a neurological, incurable syndrome, currently affecting mainly children between 5 and 15 years of age in South Sudan, Uganda and Tanzania. Since 1950, when NS was first described, its cause has remained a mystery. NS is characterized by head-nodding (an atonic form of epilepsy), often followed by clonic - tonic seizures, developmental retardation and faltering growth. In the affected regions, NS is a major public health problem associated with severe socio-economic consequences. After exploratory missions to South Sudan, Uganda and the Democratic Republic of the Congo (DRC), we gathered epidemiological evidence that supports the hypothesis that NS is a disease caused by a pathogen transmitted by blackflies, the vectors that transmit the parasitic worm that causes onchocerciasis. We hypothesise that the same disease is also endemic in other onchocerciasis hyper-endemic regions e.g. in the Mbam valley, Cameroon and the Orientale Province, DRC (where it is referred to as “river epilepsy”). In this project we aim to investigate our hypotheses in South Sudan, Uganda, Tanzania, Cameroon and the DRC with a trans-disciplinary approach including clinical-epidemiological, post-mortem, eco-entomological, and metagenomic studies. We will study the effect of vector control methods and ivermectin distribution on the incidence of river epilepsy. So far a multi-country study on NS was never done and nearly all previous studies were cross-sectional, carried out during short country visits. With this long term research plan we hope to finally discover the cause of NS and detect effective control strategies to decrease the incidence of epilepsy in onchocerciasis endemic areas.


EU, Horizon 2020


€ 2417000


Prof. Robert Colebunders


Universitaetsklinikum Bonn, Germany

San Diego State University Foundation, United States


1/10/2015 - 30/09/2020


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


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.


Amsterdam Institute for Global Health and Development (AIGHD)
Academic Medical Centre
University of Amsterdam


Prof. Robert Colebunders


01/01/2015 - 31/12/2017

Réduire d'épilepsie des rivières en République Démocratique du Congo


L’épilepsie des rivières observé dans des régions hyperendémique pour l’onchocercose  est un syndrome neurologique inexpliqué. Notre hypothèse est que cette forme d’épilepsie, qui inclus le syndrome de hochement de tête (Nodding Syndrome), est causé par un pathogène encore inconnu transmis par les Simulii (l’insecte qui également transmet la cécité des rivières). Avec  notre projet nous voulons tester cette hypothèse et évaluer dans la Province Orientale de la RDC, des interventions qui puissent réduire l’incidence de cette épilepsie.


VLIR-UOS (South Initiative)


Principal investigator: Colebunders Robert
Investigator: Jean-Pierre Van geertruyden


Prof. B. AgassaUniversité de Kisangani, RD Congo