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