South Sudan Nodding Syndrome Study


The study aims to gain insight in the etiology of nodding syndrom, as well as add to the knowledge about risk factors, prevalence, incidence and progression of the disease.

The study will also educate local health care centers on how to improve prevention strategies


Nodding syndrome (NS) is an unexplained neurological illness that has been reported in three African countries (Uganda, South Sudan and Tanzania) and mainly affects children for the first time when they are between 5 and 15 years of age. NS is characterized by head-bobbing spells. The onset of the spells is often followed, years later, by other types of seizures, growth faltering and cognitive deterioration. There is an urgent need for more detailed investigation into NS in order to address the outstanding questions with respect to prevalence, natural history and aetiology. The findings of this study will be critical for health care providers to plan and improve their NS treatment and preventive programs.


Name: SSNSS: South Sudan Nodding Syndrome Study
Status: Active
Principal Investigators: Prof. Dr. Michael Boele van Hensbroek
Departments(s): AMC Global Health Department
Partners: AIGHD


HealthNet TPO

Royal Institute for the Tropics (KIT)

University of Juba

University of Antwerp

local partners:



Contact information: Project Manager: Jolien van der Vaart


Duration: Start date: 1 January 2015

Duration: 36 months

End date: 1 January 2018

Funded by: Ministry of Foreign Affairs of The Netherlands
Countries: South Sudan