Seizure Diaries in the Epilepsies – Why Accuracy MATTERS - Dr. Ewan Nurse, University of Melbourne, Australia
Seizure diaries often capture less than half of seizures in developmental epileptic encephalopathies such as LGS & Dravet. Dr Ewan Nurse explains why this matters & how new technology & collaboration can transform epilepsy care. Watch/listen/read here 👇🏻!
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Episode Highlights
Why seizure diaries in LGS, Dravet & DEEs often record less than half of seizures
How carers may log non-seizure events, creating major gaps in reporting
The promise & limits of new seizure tracking devices, from wearables to EEG headbands
Why engineers, clinicians, carers & families must collaborate to improve epilepsy research & care
About Dr. Ewan Nurse
Ewan Nurse is a Principal Fellow in the Department of Medicine (St Vincent’s Hospital) at the University of Melbourne. He leads collaborative projects that bridge academic research and industry in the field of epilepsy. His expertise includes electroencephalography (EEG), clinical epileptology, and AI.
Full profile ewan-nurse
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Trailer – Seizure reporting is about people, not just data
00:00 Ewan Nurse
“I still remember the first time I saw a generalised tonic-clonic seizure in the wards, right, it’s… a very important thing. This isn't just data, it's real people.”00:05 Torie Robinson
Yeah.00:05 Ewan Nurse
…a very important thing. This isn't just data, it's real people.”Intro – Diaries in LGS, Dravet & developmental epileptic encephalopathies
00:10 Torie Robinson
What about complex epilepsies like Lennox-Gastaut and Dravet Syndrome? When people are having multiple seizure types - often daily - how well do seizure diaries reflect reality? And what about the role of carers, or the promise of new devices?In part 2 of our chat, Ewan Nurse takes us deeper into seizure reporting in developmental and epileptic encephalopathies (DEEs). We explore why seizure diaries often miss so much, how technology like wearables and implants could help, and why collaboration between engineers, clinicians, and families is the only way forward.
Meet Dr. Ewan Nurse 🤩 – Engineer & researcher in the epilepsies
00:52 Ewan Nurse
My name’s Dr. Ewan Nurse. I live in Melbourne, Australia. My background is in engineering, and I do research in a variety of things to do with the epilepsies – mostly EEG, clinical epilepsy, and a bit of AI. A lot of what I try and do is seizure detection from EEG.Study findings – Seizure types, missed events & sensitivity gaps
01:12 Torie Robinson
What about DEEs or developmental and epileptic encephalopathies? You've looked at seizure reporting for those, and people tend to have more seizures generally in this, with DEEs, right?01:22 Ewan Nurse
Yeah, so we did another study. We put together a cohort of 108 patients with DEEs: 65 with Lennox-Gastaut syndrome, 10 with Dravet, and 33 with other syndromes. These patients tend to have more seizures, more seizure types, and even some non-epileptic events recorded by carers as seizures.We looked at diary sensitivity – the percentage of seizures captured in diaries compared with video EEG. In LGS, only just over 50% were reported, in Dravet about 75%. Of course, carers can’t watch someone 24/7, especially at night, so this shows the challenge.
Why diaries miss seizures – Sleep, subtlety & carer challenges
03:40 Ewan Nurse
This isn’t about blaming carers, it’s about recognising that things happen when people aren’t in the room, or events look like seizures but aren’t. LGS and Dravet may be strictly defined syndromes, but they’re still very heterogeneous. Everyone’s seizures, circumstances, and epilepsy are different.New tech & better diaries – Wearables, implants & EEG headbands
04:07 Torie Robinson
With all this delightful info, what are you going to do with it?04:20 Ewan Nurse
The first step is education. Just knowing there are gaps helps us design better diaries and training. There are also more devices being developed – wristwatches, implants, video camera systems. Some are promising but mostly detect generalised tonic-clonic seizures.EEG-based devices, including headbands and implants, are improving, and they’re designed for daily life rather than hospitals. Progress is happening, but it takes time and collaboration.
Collaboration & humanising research – Engineers, clinicians, carers & families
07:18 Torie Robinson
I think we’re seeing more and more clinicians involved with scientists and patients. Do you see value in this?07:37 Ewan Nurse
A lot of research comes from clinicians, who spend part of their time working with patients and part in research. That’s a great thing because it means you can bring problems from the clinic into the lab. What’s improving now is how clinicians and technologists work together. In the past, data would just be handed over and returned with results – now it’s about building long-term relationships.I once heard a neurologist joke that engineers are only good for two things: beer and trains! But in reality, when engineers spend time in wards, clinics, and with families, they really understand the challenges. I like to say I speak “neurologist” now – I can even say periventricular nodular heterotopia!
Seeing consults and seizures reminds you this isn’t just data, it’s real people. For technologists interested in the epilepsies, I’d say: visit hospitals, meet families, talk to foundations, and listen to podcasts like this. Once you engage, you realise it’s the only way to make a difference.
Beyond seizures – Mood, memory & daily life in the epilepsies
10:53 Ewan Nurse
It humanises it. The worst thing you can do is reduce the epilepsies to numbers on a screen. Visiting consults reminds me how seizures affect people, but also how the epilepsies affect mood, memory, daily functioning, and relationships. Talking to patients and carers shows the real scope of the disease.Closing – Hope for the future of seizure tracking
13:02 Torie Robinson
Thank you to Ewan for sharing his research on seizure diaries in DEEs, and for giving us hope about the future of seizure tracking. Check out more about Ewan at torierobinson.com where you can access this podcast, the video, and the full transcript.
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Reported by Torie Robinson
Edited and produced by Carrot Cruncher Media
Seizure diaries often miss over half of seizures in LGS & Dravet! Dr Ewan Nurse shares research, new tech & why engineers, clinicians & carers must work together for improved epilepsy care.