Citation Publication
Title Study location Study date Study design Cases Controls Key finding(s) Journal
75 2013 Pyomyositis in Nodding syndrome (NS) patient--a case report Uganda N/A Case report 1 - Pyomyostitis in a probable NS case. Seizures treated with sodium valproate. The Pan African Medical Journal
52 2013 Neuropsychiatric perspectives on nodding syndrome in northern Uganda: a case series study and a review of the literature Uganda N/A Case series 6 - NS patients may have histories of psychological trauma, and comorbidities including PTSD, DTD and depression. Treatments included CBZ or PHB and sometimes imipramine, with mixed results. African Health Sciences
15 2014 Patients with nodding syndrome in Uganda improve with symptomatic treatment: a cross-sectional study Uganda 2013 Cohort 484 476 Controls were patients with OCE. Treatment according to the 2013 guidelines resulted in 25% of NS patients being seizure free. >70% had a reduced seizure frequency. Emotional and behavioural difficulties resolved in 59%. 86/484 children who had not previously been able to attend school could now do so. 83.1% achieved independence in basic self-care. BMJ Open
76 2014 A longitudinal study on nodding syndrome--a new African epilepsy disorder Tanzania 2009 Cohort 62 - Longitudinal follow-up study on Winkler and colleagues 2008. HN decreased in 11, increased in 2, did not change in 4 and stopped in 15 of 32 patients treated with PHB. Of the 15, 13 still had GTCS. HN stopped in 3 patients treated with CBZ, all continued to have GTCS. Epilepsia
78 2015 Catatonia in Ugandan children with nodding syndrome and effects of treatment with lorazepam: a pilot study Uganda N/A Cross-sectional 33 - 16/33 patients met diagnostic criteria for catatonia. Lorazepam administration reduced the severity of catatonia symptoms in 10 of 16 patients, and by more than 50% in 6. BMC Research Notes
48 2015 Evaluation and immunomodulatory treatment at the NIH of children with nodding syndrome from northern Uganda USA N/A Case series 3 - Abstract only available. 3 related NS patients were examined. CSF from 1/3 had oligoclonal bands, another had partially identical bands in CSF and serum. Biomarkers for pyridoxine-responsive seizures were absent in all. Mt DNA was normal. 2/3 were given plasmapheresis, 1/3 was given IVIG, all were given pyridoxine. No HN episodes recorded, 1/3 had multiple seizures. Neurology
77 2015 Neurophysiological and clinical findings on nodding syndrome in 21 South Sudanese children and a review of the literature South Sudan 2012-13 Case series 21 - 18 probable cases, 3 confirmed. Clincial and EEG findings described. None achieved good seizure control with CBZ monotherapy (n=9) or in combination with PHB (n=9) or PHT (n=3). Seizure-European Journal of Epilepsy
11 2015 Case report: nodding syndrome, Western Uganda, 1994 Uganda 1994 Case report 1 - Description of NS in a 15-year-old male from an OV endemic area in an area of Western Uganda not previously associated with NS. Treatment with PHB did not achieve long-term seizure control. American Journal of Tropical Medicine and Hygiene
72 2016 Health seeking behaviours among caretakers of children with nodding syndrome in Pader District - Northern Uganda: a mixed methods study Uganda 2013 Cross-sectional 249 caregivers - 78.3% of caretakers sought help from a health facility, 50% with a delay of at least one month. 12.9% sought help from traditional healers and 8.8% self-medicated. PLoS One
73 2016 An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda Uganda N/A Qualitative 54 caregivers - Caregivers have a high burden of care and associated emotional agony, anxiety for their patient's safety and own risk of burnout, face social isolation and stigmatisation and homicidal and suicidal ideations were recorded. BMC Psychiatry
83 2017 Ivermectin treatment in patients With onchocerciasis-associated epilepsy: protocol of a randomized clinical trial Democratic Republic of Congo 2017-ongoing Randomised controlled trial protocol N/A N/A Protocol for a RCT in OV+ epilepsy patients, comparing immediate and delayed (after 4 months) ivermectin treatment. All patients will receive AEDs. JMIR research protocols
19 2018 Treatment and rehabilitation outcomes of children affected with nodding syndrome in Northern Uganda: a descriptive case series Uganda 2012 Retrospective 32 - 13 months of nutritional and multivitamin supplementation reduced the incidences of severe or moderate wasting (9.7% to 2.6% and 19.7% to 2.6% respectively) and severe and moderate stunting (combined 54.8% to 12.8% and 7.7% respectively). AED therapy for 29 cases was detailed, although reduction in seizure frequency not clearly reported. Higher seizure frequency associated with female gender or febrile illness. Pan African Medical Journal
82 2018 Setting up a clinical trial for a novel disease: a case study of the doxycycline for the treatment of nodding syndrome trial - challenges, enablers and lessons learned Uganda 2015 Randomised controlled trial protocol 115 115 NS patients will be given 6 weeks of doxycycline (100mg/day) or a placebo. Primary outcome: % of patients with anti-LM-1 Ig at 24mo post-treatment. RCT protocol (NCT02850913)