Nodding Syndrome – a critical note and a plea to join forces

Schmutzhard, Erich; Winkler, Andrea Sylvia

doi:10.1111/tmi.12417

Cited by 6 publications

(7 citation statements)

References 22 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…14,24 We suggest that in a possible revision of the NS definition, this criterion should be changed with the aim to more adequately assess the quality of head nodding moves as a slow, non-abrupt movement that is to be differentiated from jittering, jerks, or cloni. Until then, we agree with others 25 that studies on NS should apply the Kampala 2012 definition 14 as a reference frame for the clinical assessment of suspected cases. Before our epilepsy survey in March-June 1994, the research team was not aware of the existence of patients with head nodding seizures in Kabende parish, although the condition of "nateera omutwe" was known to the local population.…”

Section: Discussionsupporting

confidence: 83%

Onchocerciasis-Associated Epilepsy with Head Nodding Seizures—Nodding Syndrome: A Case Series of 15 Patients from Western Uganda, 1994

Kaiser

Asaba

Rubaale

et al. 2018

The American Journal of Tropical Medicine and Hygiene

View full text Add to dashboard Cite

Nodding syndrome (NS) is an encephalopathy characterized by the core symptom of epileptic head nodding seizures, affecting children at the age between 3 and 18 years in distinct areas of tropical Africa. A consistent correlation with onchocerciasis was found, but so far, the causation of NS has not been fully clarified. With a systematic analysis of features of a cohort of epilepsy patients examined in the Itwara onchocerciasis focus of western Uganda in 1994, we provide evidence that NS actually occurred in this area at this time, and we demonstrate a correlation between prevalence of NS and that of onchocerciasis in different villages. Following the elimination of onchocerciasis by community-directed treatment with ivermectin and ground larviciding, our data provide a baseline to examine the question whether NS will disappear once its putative cause has been removed.

show abstract

Section: Discussionsupporting

confidence: 83%

Onchocerciasis-Associated Epilepsy with Head Nodding Seizures—Nodding Syndrome: A Case Series of 15 Patients from Western Uganda, 1994

Kaiser

Asaba

Rubaale

et al. 2018

The American Journal of Tropical Medicine and Hygiene

View full text Add to dashboard Cite

show abstract

“…Nevertheless, we found no evidence that WHO has made any progress on these recommendations. However, independently, two articles were published in 2015 outlining the research needs for NS [ 1 , 5 ]. Additionally, a scientific meeting focused solely on NS occurred in Uganda in July 2015 [ 9 ].…”

Section: Resultsmentioning

confidence: 99%

“…Nodding syndrome (NS) is a neurological disease of unknown pathogenesis occurring primarily in East Africa, where a previously healthy child, typically aged between 3 and 18 years, experiences head nodding episodes potentially combined with epileptic seizures [ 1 - 3 ]. The episodes may be triggered by cold temperatures or food [ 4 , 5 ]. During the episodes children lose contact with their surroundings, which can be fatal if close to a cooking fire or deep water source.…”

Section: Introductionmentioning

confidence: 99%

“…Children progressively develop varying degrees of cognitive impairment which may lead to severe wasting, a vegetative state and, eventually, death [ 1 , 4 , 7 ]. There is no known cure or agreed treatment regimen despite the disease having been recognized for more than 50 years [ 5 , 8 , 9 ]. It is unknown if NS is infectious (it is clustered within families and regions [ 4 ]), genetic, related to onchocerciasis (most affected children are infected with Onchocerca volvulus ) or measles, war, malnourishment, fungal contamination of food, or a combination of these factors [ 1 , 9 ].…”

Section: Introductionmentioning

confidence: 99%

“…The disease is contained to three low-income countries (South Sudan, Tanzania and Uganda), although it may also be present in other onchocerciasis-endemic areas [ 5 , 10 ]. Additionally, it impacts relatively few children (i.e.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Financing and collaboration on research and development for nodding syndrome

Årdal

Røttingen

2016

Health Res Policy Sys

View full text Add to dashboard Cite

BackgroundNodding syndrome is a neurological disease with no known cure or treatment, impacting children aged 3–18 years old, mainly in East Africa. Children progressively develop varying degrees of cognitive impairment which may lead to severe wasting, a vegetative state and, eventually, death. Despite its 50-year existence, little is known about its cause, risk factors and prognosis. It is a disease where markets will not provide solutions because the patients are both too few and too poor, making it especially neglected. Open source innovation has been recommended as an approach to neglected disease research in order to maximize available funding through greater collaboration and openness to results. Nodding syndrome is a useful case to examine the relevance of open source innovation.MethodsWe assessed the magnitude of research related to nodding syndrome, its availability, financing and the amount of collaboration. We surveyed researchers regarding their motivations, attitudes toward open source innovation concepts and barriers to greater collaboration.ResultsLittle research is occurring for nodding syndrome, but it is openly available and researchers are highly collaborative. The disease is largely unknown, which is partly attributed to WHO not classifying nodding syndrome as a neglected tropical disease and not including it in any formal programme. Impacted countries, particularly Uganda, demonstrate a strong degree of ownership through both authorship and research financing. Nodding syndrome researchers have been allocated a total of €5 million from 2013 to 2019 in grant funding. Annual financing, due to three new grants, doubled from 2014 to 2015.ConclusionsNodding syndrome, a disease previously ignored by the international community, is starting to receive greater attention, although financing remains modest. If infectious, a larger epidemic could take the world by surprise. Open source innovation can likely help by sharing research protocols (to avoid duplication) and early research results (to adjust to the findings of others). The existing scientists have already endorsed open source innovation, but increased financing is needed. The support of just a few high-income countries could reap a large impact.

show abstract