Epilepsy: Why Your Seizure Diary Is Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Most of what epilepsy is like happens between appointments: how often seizures come, what they look like, what seems to bring them on, how a new medicine changed them and what it cost in tiredness or mood. A clinic sees a snapshot. A seizure diary, kept by the person or by someone who cares for them, sees the whole film. That record, joined to the tests and the treatment history, is what research on epilepsy treatment needs.

How many people live with it

The WHO counts around 50 million people worldwide with epilepsy, "making it one of the most common neurological diseases globally", and an estimated 5 million people are diagnosed with epilepsy each year.

The records worth keeping

NICE's 2022 guideline on epilepsy describes the tests and reviews that leave records:

• An ECG after a first seizure: a 12-lead ECG to help identify cardiac-related conditions that could mimic an epileptic seizure.
• An EEG: when epilepsy is suspected, a routine EEG carried out while awake to support diagnosis. The report describes the brain activity it recorded.
• A brain MRI: NICE recommends an MRI scan for children, young people and adults diagnosed with epilepsy, apart from some specific types.
• Monitoring reviews: regular (at least annual) monitoring reviews for many adults, where medicines and side effects are discussed.

Your seizure diary sits beside these: dates, what happened, how long it lasted, what came before. If you do not have your EEG or MRI reports, ask your neurology service for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete epilepsy story with the records the guideline lists comes to about $95 per licence on the benchmark today. With 90 seizure diary entries added, it comes to about $350 per licence, because a day-by-day record of seizures linked to tests and treatment is the real-world evidence research rarely gets. Every line and its source is on the epilepsy page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

For parents and carers

Many seizure diaries are kept by a parent or a partner, because the person having the seizure often does not remember it. You can share the story of a child or adult you care for, as their parent or guardian or with their permission. The questions are then asked about them, and the record notes that a carer told it.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every medicine and treatment you tried. You can add pages of your seizure diary, test reports and clinic letters as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.