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Table 4 Research priorities on epilepsy management in onchocerciasis-endemic regions

From: Comprehensive management of epilepsy in onchocerciasis-endemic areas: lessons learnt from community-based surveys

Aspect Research question Possible research direction
Epilepsy screening What is the optimal screening tool to detect PWE by non-physicians? - Need to validate screening questionnaires in different settings
- Evaluate the feasibility of using video-taped seizures as a diagnostic tool
Diagnosis of epilepsy What is the risk of seizure recurrence in an O. volvulus-infected person after a first seizure? Prospective study to follow up healthy children in highly endemic onchocerciasis settings. If recurrence risk is found to be ≥60%, then one seizure in the presence of onchocerciasis would be considered as epilepsy [33]
How can OAE be predicted or diagnosed in an early phase? Prospective study in onchocerciasis-exposed children with regular clinical, electrophysiological and brain imaging assessment; evaluation of biomarkers in blood, CSF, and/or skin snips
Epilepsy treatment What is the optimal training module for first line healthcare workers to care for PWE? Intervention study to test different training modules for epilepsy care
What is the optimal anti-epileptic treatment for each type of OAE, including absences and nodding seizures? Multi-center cohort study and if possible clinical trials to evaluate the efficacy and safety of different treatment regimens
Is anti-onchocerciasis treatment able to reduce the frequency of seizures in persons with OAE? Clinical trials to assess the effect of ivermectin [67] and doxycycline [68] on seizures are ongoing
Strengthening onchocerciasis elimination programs Is it safe to give ivermectin to children < 5 years with onchocerciasis and possibly OAE? - Clinical trials to obtain safety data about ivermectin use in children < 5 years [52]
- Development of safer drugs for onchocerciasis which can be used in children < 5 years
Sustainability of the epilepsy care program What is the impact and cost-effectiveness of a community-based epilepsy program? Impact and cost analysis studies before and after the implementation of an epilepsy care program [31]. The following outcome indicators should be assessed: % PWE treated, % PWE adherent to treatment and seizure free, change in epilepsy-related mortality, % epilepsy complications, % PWE continuing education or working, change in direct cost of care per PWE, indirect cost averted by the epilepsy program, cost of epilepsy for the PWE, family and community; cost of running the epilepsy clinic/program
  1. CSF Cerebrospinal fluid, PWE Person with epilepsy