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10 Headlines A closer look at a condition: EPILEPSY There are more than 700 different neurological disorders, from the extremely rare to more well-known conditions such as epilepsy, Parkinson’s disease, and dementia. In each Headlines this year, we will take a closer look at a particular neurological disorder and how our funding is helping clinicians and researchers to better understand it. This edition we look at epilepsy, which affects nearly 50,000 New Zealanders, and is the subject of several Kiwi-led research projects. An international database for epilepsy research Dr Peter Bergin is a consultant neurologist based in the Auckland region. He is also the director of New Zealand’s only epilepsy surgery programme, as well as the founder and chairman of EpiNet. Peter and his team were awarded a project grant to help establish EpiNet; an online patient registry for clinicians and researchers, allowing for efficient data collection and improved management of the global epileptic population, as well as research into the condition itself. To date, more than 15,000 patients are registered. In 2013, Peter and his team were awarded another project grant to use EpiNet to undertake four randomised controlled trials in which the drug levetiracetam was compared with carbamazepine, lamotrigine, and sodium valproate to determine which was the most effective in patients with new onset epilepsy. In 2018, Peter and his team received a small project grant to establish a multicentre registry for Sudden Unexpected Death in Epilepsy (SUDEP) within EpiNet. SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Peter and his team hope that the registry will help them determine the incidence of SUDEP in New Zealand, identify risk factors that predispose a person with epilepsy to SUDEP, and eventually assist in risk reduction. In continuation of the SUDEP registry, Peter and his team received a project grant in the second grant round of 2018 to identify all people who die from SUDEP in New Zealand over the next five years. By October 2021, 72 cases of definite, probable, or possible SUDEP had been identified, and a further 57 deaths were still under investigation (data began being collected in August 2019). These results suggest that the incidence of SUDEP in New Zealand is between 0.7 and 1.4/1000 people with epilepsy per year. “This study is casting light on a previously hidden tragedy. People have been dying from SUDEP for many years, but the problem has largely been ignored. We are learning about the circumstances of death and gradually starting to identify risk factors. More importantly, we hope that we will be able to identify factors that might prevent patients from dying.” For more about Peter’s research, his 2020 Brain Awareness Month lecture can be viewed in our lecture library: neurological.org.nz/lecture-library About epilepsy Epilepsy is a neurological disorder where a person suffers sudden recurrent and spontaneous seizures. It is one of the most common neurological disorders, affecting roughly 65 million people worldwide. People can develop epilepsy at any age, although it is most commonly diagnosed in early childhood and in the elderly. • 45,000 – 50,000 New Zealanders have epilepsy (approximately 1% to 2% of the population). • It is estimated that up to 70% of people living with epilepsy could live seizure free if properly diagnosed and treated. • The risk of premature death in people with epilepsy is up to three times higher than for the general population. • Nearly 80% of people with epilepsy live in low and middle income countries. Research In the Neurological Foundation’s 50-year history, thanks to our supporters, an array of research has been funded into the prevention, treatment, and understanding of epilepsy. Notable recent projects include those undertaken by Dr Peter Bergin, Professor Lynette Sadleir, and Dr Rachael Sumner.