Nodding syndrome research, lessons learned from the NSETHIO project

Abstract

Background.Until recently, nodding syndrome (NS) was considered as a mysterious disease of unknown etiology. A link between onchocerciasis and epilepsy was suspected for a long time. However, onchocerciasis was not considered as the cause of NS because NS was believed to occur only in onchocerciasis-endemic regions in Uganda, South Sudan, and Tanzania. In October 2015, with funding from the European Research Council, the NSETHIO group launched a trans-disciplinary, multi-country research project to identify the cause of NS and to study the link between onchocerciasis and epilepsy.Methods.We reviewed NSETHIO activities as well as all published papers, and compared project findings with results of previous research on NS.ResultsFindings from the NSETHIO project showed that NS is only one of the clinical manifestations in the wide spectrum of onchocerciasis-associated epilepsy (OAE) that could be prevented by strengthening onchocerciasis elimination programs. NSETHIO demonstrated that OAE is an important neglected public health problem in onchocerciasis-endemic areas with no or a sub-optimally functioning onchocerciasis control strategies.Conclusions.Today there is overwhelming evidence that NS together with the Nakalanga syndrome is clinical presentations of OAE, a condition that could be prevented by strengthening onchocerciasis elimination programs. While research needs to continue to elucidate the pathophysiological mechanisms causing NS, new strategies to accelerate onchocerciasis elimination coupled with community-based surveillance and treatment programs for epilepsy are urgently needed in areas of high Onchocerca volvulus transmission.

Onchocerciasis: Target product profiles of in vitro diagnostics to support onchocerciasis elimination mapping and mass drug administration stopping decisions

“…In contrast, the first stage larvae (microfilariae) migrate through the skin, causing debilitating pruritus and skin diseases, and to the eyes, leading to progressive and irreversible blindness. Onchocerciasis is also hypothesized to lead to neurological disorders, including epilepsy [ 11 ], nodding syndrome [ 12 ], and stunted growth [ 13 ].…”

OV16 Seroprevalence among Persons with Epilepsy in Onchocerciasis Endemic Regions: A Multi-Country Study

“…OAE is a major public health problem in onchocerciasis-endemic areas, where onchocerciasis elimination programs are working sub-optimally or where such programs still need to be implemented [3,7] but disappear when onchocerciasis is eliminated from the area [5,8]. In recent years, we conducted many epidemiological studies to investigate the association between onchocerciasis and epilepsy in areas with high ongoing or past onchocerciasis transmission [9]. During these studies, persons with epilepsy (PWE) were tested…”