Research projects on OAE and Nodding syndrome

Reducing onchocerciasis-associated morbidity in children (2022-2025)

Joseph Nelson Fodjo Siewe is currently conducting postdoctoral research on "Reducing onchocerciasis-associated morbidity in children".

Uncovering the disease mechanism of Onchocerciasis Associated-Epilepsy (OAE) (2022-2025)

Amber Hadermann is currently pursuing her PhD on "Uncovering the disease mechanism of Onchocerciasis Associated-Epilepsy (OAE)".

Reducing the burden of onchocerciasis, including onchocerciasis-associated epilepsy (2022-2025)

Luís-Jorge Amaral is currently pursuing his PhD with a central focus on reducing the multifaceted burden of onchocerciasis. His research delves into the burden of the disease, particularly emphasising onchocerciasis-associated epilepsy, including nodding and Nakalanga syndromes. Moreover, Luís-Jorge is actively involved in assessing and implementing control interventions, such as ivermectin distribution and blackfly vector control methods, aiming to provide data-driven insights into the disease's control and potential eradication.

Related publications:

  1. Jada SR, Amaral LJ, Lakwo T, Carter JY, Rovarini J, Bol YY, Logora MY, Hadermann A, Hopkins A, Fodjo JNS, Colebunders R. Effect of onchocerciasis elimination measures on the incidence of epilepsy in Maridi, South Sudan: a 3-year longitudinal, prospective, population-based study. Lancet Glob Health. 2023 Aug;11(8):e1260-e1268. doi: 10.1016/S2214-109X(23)00248-6. 
  2. Bhwana D, Siewe Fodjo JN, Amaral LJ, Vandevenne L, Francis F, Challe DP, Mmbando BP, Colebunders R. Disability assessment among persons with epilepsy in Mahenge, an onchocerciasis-endemic area in Tanzania: A cross-sectional study. Epilepsy Behav. 2023 Sep;146:109367. doi: 10.1016/j.yebeh.2023.109367.
  3. Siewe Fodjo JN, Van Cutsem G, Amaral LJ, Colebunders R. Mortality among persons with epilepsy in onchocerciasis-endemic and non-endemic areas of sub-Saharan Africa: A systematic review and meta-analysis. Seizure. 2023 Aug;110:253-261. doi: 10.1016/j.seizure.2023.07.006. Epub 2023 Jul 10. PMID: 37451075.
  4. Bhwana D, Amaral LJ, Mhina A, Hayuma PM, Francis F, Siewe Fodjo JN, Mmbando BP, Colebunders R.Impact of a bi-annual community-directed treatment with ivermectin programme on the incidence of epilepsy in an onchocerciasis-endemic area of Mahenge, Tanzania: A population-based prospective study. PLoS Negl Trop Dis. 2023 Jun 28;17(6):e0011178. doi: 10.1371/journal.pntd.0011178.
  5.  Amaral LJ, Bhwana D, Mhina AD, Mmbando BP, Colebunders R. Nodding syndrome, a case-control study in Mahenge, Tanzania: Onchocerca volvulus and not Mansonella perstans as a risk factor.PLoS Negl Trop Dis. 2023 Jun 20;17(6):e0011434. doi: 10.1371/journal.pntd.0011434.
  6. Amaral LJ, Bhwana D, Fomo MF, Mmbando BP, Chigoho CN, Colebunders R. Quality of life of persons with epilepsy in Mahenge, an onchocerciasis-endemic area in Tanzania: A cross-sectional study.Epilepsy Behav. 2023 Aug;145:109302. doi: 10.1016/j.yebeh.2023.109302.
  7. Van Cutsem G, Siewe Fodjo JN, Dekker MCJ, Amaral LJ, Njamnshi AK, Colebunders R. Case definitions for onchocerciasis-associated epilepsy and nodding syndrome: A focused review. Seizure. 2023 Apr;107:132-135. doi: 10.1016/j.seizure.2023.03.024. 
  8. Hadermann A, Amaral LJ, Van Cutsem G, Siewe Fodjo JN, Colebunders R. Onchocerciasis-associated epilepsy: an update and future perspectives. Trends Parasitol. 2023 Feb;39(2):126-138. doi: 10.1016/ Epub 2022 Dec 15. PMID: 36528471.

Nodding Syndrome: a trans-disciplinary approach to identify the cause and decrease the incidence of river epilepsy (NSETHIO) (2015 - 2020)


Nodding syndrome (NS) is a neurological 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

More information on the website

Réduire l'épilepsie des rivières en République Démocratique du Congo. (2016 - 2017)


La RD Congo et l' l'Université de Lubumbashi (UNILU) souffrent d'une grave carence du personnel compétent en recherche scientifique clinique de qualité internationale et en relève académique; surtout en pathologies infectieuses. Ce projet initial vise à créer une unité de recherche clinique à la Faculté de médecine de l'UNILU. Pour s'y faire, ce projet permettra la formation du personnel académique dans la conduite des recherches cliniques mais aussi en épidémiologie et statistiques. La formation du personnel scientifique se concrétisera par la réalisation de 7 projets de recherches sélectionnés de manière compétitive avec un sup-port adéquat de laboratoire. Les récipiendaires bénéficieront des cours ad hoc et d'un encadrement des professeurs de l'UA, de l'UNIKIN et de l'UNILU afin de pouvoir continuer avec leur projet de recherche jusqu'au niveau doctoral.




Principal investigator: Jean-Pierre Van geertruyden


Abdon Mukalay, Université de Lubumbashi


13/03/16 - 31/12/2017

Mectizan donation programme: Nodding syndrome research (2014-5)

VLIR UOS. The cause of the nodding syndrome. (2015-6)

ITM. An Interdisciplinary Study Contributing to the Identification of the Cause of Nodding Syndrome in 4 Countries. (2014-7)

Dutch Development Cooperation. South Sudan Nodding Syndrome Study program. (2016-7)

Fonds d’ expertise, DRC. Développement d’un réseau national de surveillance de l’épilepsie des rivières. (2015-7)

Advanced ERC grant. NSETHIO: Transdisciplinary research to detect the cause of nodding syndrome and to decrease the incidence of river epilepsy. (20015-19) (AdG671055)

VLIR UOS. Implementation of alternative sampling strategies as a tool for improving therapy of and insight into Nodding syndrome (2017-8)

VLIR INCO grant for the organization of the first international workshop on onchocerciasis associated epilepsy. (2017)

ERCPoC grant. NSstop Development of a policy to stop the suffering caused by Nodding Syndrome and Onchocerciasis associated epilepsy grant 768815 1.09.17-31.06.19

VLIR Team project Tanzania. Multi-disciplinary approach to control onchocerciasis-associated epilepsy in the Mahenge area in Morogoro region, Tanzania 1.09.17-31.12.21

VLIR-Joint project African network to study, treat and prevent onchocerciasis associated epilepsy (OAE-Africa). 1.01.19-31.12.21

Research for health in humanitarian crisis R2hc/elrrha grant (DIFID, NHS and Welcome trust). Evaluation of a community-based comprehensive epilepsy prevention and treatment program in onchocerciasis endemic villages in South Sudan. 1.09.19- 31.08.22.

African Research Network for Neglected Tropical Diseases grant Potential impacts and mitigation strategies of the COVID-19 induced delay of Community Directed Treatment with ivermectin on onchocerciasis elimination targets in Ghana. 1.12.20-31.12.21

VLIR UOS team project 2018-21 Multi-disciplinary approach to control onchocerciasis associated epilepsy in the Mahenge area in Morogoro region, Tanzania

VLIR UOS Joint project 2019-21 African network to study, treat and prevent onchocerciasis associated epilepsy (OAE-Africa)

VLIR UOS Joint project 2020-23 Improving diagnostics and care for childhood onset epilepsies and its common neurological co-morbidities in Tanzania

Welcome trust NIHR grant Epilepsy Pathway Innovation in Africa (EPInA) 2019-23

FIND Evaluation of Onchocerciasis RDTs and collection of blood samples for future assessments 2022-3

Research for health in humanitarian crisis R2hc/elrrha grant (DIFID, NHS and Welcome trust) Innovative approaches to reduce the burden of disease caused by onchocerciasis (IARDO) 2023-2025

Taskforce: Feasibility, ease of use and performance evaluation of novel onchocerciasis rapid diagnostic tests in the field setting in South Sudan 2023-4

Research Foundation Flanders (FWO): Reducing onchocerciasis-associated morbidity in children (Ref: 1296723N)

Future Africa (University of Pretoria). Eco-friendly approach for onchocerciasis control around the Edea dam in Cameroon (Ref: 0701-4gf)

Research Foundation Flanders (FWO). Stopping the burden of disease caused by onchocerciasis-associated epilepsy (Ref: G0A0522N)

European and Developing Countries Clinical Trials Partnership (EDCTP2). Slash and Clear for Onchocerciasis Control and Epilepsy Prevention (Ref: TMA2020CDF-3152)

Royal Society of Tropical Medicine and Hygiene. Feasibility and acceptability of Slash and Clear in Cameroon.

Young Researchers Fund (University of Antwerp). Association between Ov16 seropositivity and cognitive performance (Ref: 40687)