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Development of a policy to stop the suffering caused by Nodding Syndrome and Onchocerciasis associated epilepsy

Total Cost €


EC-Contrib. €






 NSstop project word cloud

Explore the words cloud of the NSstop project. It provides you a very rough idea of what is the project "NSstop" about.

components    cure    algorithms    groups    uganda    strategy    head    scientists    health    tune    stakeholder    clinical    probably    international    trained    until    establishing    policy    governmental    reported    erc    insufficiently    stop    intellectual    distributors    create    ns    surveillance    disability    excess    disease    donors    parts    innovative    tanzania    pharmaceutical    positive    families    reducing    societal    negative    community    ivm    ministries    africa    nodding    sms    south    interventions    presentations    nsethio    industry    children    form    workshops    psychiatric    advocacy    sudan    epilepsy    ivermectin    directed    prevention    treatment    unknown    burden    plan    oae    calculate    zone    villages    care    caused    society    regions    reduce    workers    fine    nsstop    severe    initially    onchocerciasis    prevent    alliance    programs    prevalence    economic    impacts    discovered    endemic    estimate    economy    cultural    communities    death    syndrome   

Project "NSstop" data sheet

The following table provides information about the project.


Organization address
address: PRINSSTRAAT 13
postcode: 2000

contact info
title: n.a.
name: n.a.
surname: n.a.
function: n.a.
email: n.a.
telephone: n.a.
fax: n.a.

 Coordinator Country Belgium [BE]
 Total cost 149˙687 €
 EC max contribution 149˙687 € (100%)
 Programme 1. H2020-EU.1.1. (EXCELLENT SCIENCE - European Research Council (ERC))
 Code Call ERC-2017-PoC
 Funding Scheme ERC-POC
 Starting year 2017
 Duration (year-month-day) from 2017-09-01   to  2019-02-28


Take a look of project's partnership.

# participants  country  role  EC contrib. [€] 
1    UNIVERSITEIT ANTWERPEN BE (ANTWERPEN) coordinator 149˙687.00


 Project objective

Nodding syndrome (NS) is a form of epilepsy, characterized by head-nodding, often associated with severe intellectual disability, psychiatric problems, and early death. Initially, NS was reported only in onchocerciasis-endemic regions in Tanzania, Uganda and South Sudan. Until recently, the cause of the syndrome was unknown. Therefore, no strategy for prevention and cure was possible. Our ERC project (NSETHIO) discovered that NS is only one of the clinical presentations of onchocerciasis associated epilepsy (OAE) and that this form of epilepsy is probably present in all onchocerciasis endemic regions where onchocerciasis is insufficiently controlled. We estimate that the number of excess cases of epilepsy due to onchocerciasis could be as much as 100,000. Based on NSETHIO findings we will develop an innovative comprehensive OAE policy plan that will prevent children from developing OAE and that will reduce the negative consequences of OAE for the economy and society. This plan includes the following components: strengthening community directed ivermectin (IVM) treatment programs (IVM will stop OAE), establishing an SMS based epilepsy surveillance system by epilepsy trained community-directed IVM distributors, developing a community-based care system using evidence based OAE treatment algorithms, and a community-awareness program. We will fine tune the plan during 2 OAE stakeholder workshops, field test it in a high OAE prevalence health zone and calculate its cost. We will create an international OAE alliance including scientists and health care workers, representatives of communities and advocacy groups, WHO, Ministries of Health, non-governmental organizations, the pharmaceutical industry and donors to scale up the implementation of these interventions after the end of the NSstop project. Reducing the burden of disease caused by OAE will have great positive cultural, societal and economic impacts on affected families and villages in many parts of Africa.


year authors and title journal last update
List of publications.
2018 Natalie V. S. Vinkeles Melchers, Sarah Mollenkopf, Robert Colebunders, Michael Edlinger, Luc E. Coffeng, Julia Irani, Trésor Zola, Joseph N. Siewe, Sake J. de Vlas, Andrea S. Winkler, Wilma A. Stolk
Burden of onchocerciasis-associated epilepsy: first estimates and research priorities
published pages: , ISSN: 2049-9957, DOI: 10.1186/s40249-018-0481-9
Infectious Diseases of Poverty 7/1 2019-10-08
2018 Siewe Fodjo Joseph Nelson, Colebunders Robert
Intervention for reducing epilepsy-associated stigma
published pages: , ISSN: 1525-5050, DOI: 10.1016/j.yebeh.2018.09.011
Epilepsy & Behavior 2019-10-08
2019 Joseph F.N. Siewe, Leonard Ngarka, Godwin Tatah, Michel K. Mengnjo, Leonard N. Nfor, Eric S. Chokote, Charlotte Boullé, Cyrille Nkouonlack, Fidèle Dema, Grace A. Nkoro, Wepnyu Y. Njamnshi, Earnest N. Tabah, Anne-Cécile Zoung-Kanyi Bissek, Robert Colebunders, Alfred K. Njamnshi
Clinical presentations of onchocerciasis-associated epilepsy (OAE) in Cameroon
published pages: 70-78, ISSN: 1525-5050, DOI: 10.1016/j.yebeh.2018.11.008
Epilepsy & Behavior 90 2019-08-30
2019 Joseph Nelson Siewe Fodjo, Marieke C. J. Dekker, Richard Idro, Michel Ndahura Mandro, Pierre-Marie Preux, Alfred K. Njamnshi, Robert Colebunders
Comprehensive management of epilepsy in onchocerciasis-endemic areas: lessons learnt from community-based surveys
published pages: , ISSN: 2049-9957, DOI: 10.1186/s40249-019-0523-y
Infectious Diseases of Poverty 8/1 2019-08-30
2019 Joseph Nelson Siewe Fodjo, Marieke C. J. Dekker, Richard Idro, Michel Ndahura Mandro, Pierre-Marie Preux, Alfred K. Njamnshi, Robert Colebunders
Comprehensive management of epilepsy in onchocerciasis-endemic areas: lessons learnt from community-based surveys
published pages: , ISSN: 2049-9957, DOI: 10.1186/s40249-019-0523-y
Infectious Diseases of Poverty 8/1 2019-08-30
2019 Joseph N. F. Siewe, Chinyere N. Ukaga, Ernest O. Nwazor, Murphy O. Nwoke, Modebelu C. Nwokeji, Blessing C. Onuoha, Simon O. Nwanjor, Joel Okeke, Kate Osahor, Lilian Chimechefulam, Ann I. Ogomaka, Augustine A. Amaechi, Chika I. Ezenwa, Monika N. Ezike, Chidimma Ikpeama, Ogechi Nwachukwu, Austine I. Eriama-Joseph, Berthram E. B. Nwoke, Robert Colebunders
Low prevalence of epilepsy and onchocerciasis after more than 20 years of ivermectin treatment in the Imo River Basin in Nigeria
published pages: , ISSN: 2049-9957, DOI: 10.1186/s40249-019-0517-9
Infectious Diseases of Poverty 8/1 2019-08-30
2018 Robert Colebunders, Michel Mandro, Alfred K. Njamnshi, Michel Boussinesq, An Hotterbeekx, Joseph Kamgno, Sarah O’Neill, Adrian Hopkins, Patrick Suykerbuyk, Maria-Gloria Basáñez, Rory J. Post, Belén Pedrique, Pierre-Marie Preux, Wilma A. Stolk, Thomas B. Nutman, Richard Idro
Report of the first international workshop on onchocerciasis-associated epilepsy
published pages: , ISSN: 2049-9957, DOI: 10.1186/s40249-018-0400-0
Infectious Diseases of Poverty 7/1 2019-08-30

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