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In May 2020 our researchers initiated a global project to investigate how COVID-19 has affected people with epilepsy, their carers and health care workers.

Working in partnership with local charity SUDEP Action, the Oxford Epilepsy Research Group led by Dr Arjune Sen set out to assess escalation and mitigation of risk. This has now become one of the largest global surveys in epileptology with nearly 4000 responses.

The first paper to come out of this study found that COVID-19 is having far-reaching consequences on people with epilepsy. UK respondents reported changes in seizure frequency, mental health, and sleep. Discussion of risk to people with epilepsy was shown to be infrequent, even before the pandemic. The study showed the importance of delivering optimal care to mitigate risk.

Based on this work, lead author Jennifer Thorpe, who works for SUDEP Action and has an Honorary Agreement with our Department, has just been awarded the International League Against Epilepsy COVID-19 prize for best paper in the European region.

Other papers published to date report on the impact of COVID-19 on epilepsy care, and summarise findings from the Brazilian arm of the study. The researchers are currently working on manuscripts relating to experiences in other countries as well as comparing the differential impact of COVID-19 on people with epilepsy around the world.

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