Epilepsy Registries and Surveillance Gaps

Good epilepsy care depends on knowing how many people are affected, what treatments they receive, what outcomes occur and where the gaps are. In many countries, those basic data are incomplete.

Why surveillance matters

Without reliable data, health systems cannot plan specialist services, estimate medicine needs, track avoidable deaths or measure whether treatment gaps are improving.

What an epilepsy registry can record

Registries may include diagnosis, seizure type, epilepsy syndrome, cause, medicines, surgery, comorbidities, pregnancy, injuries, status epilepticus, mortality and quality-of-life outcomes.

The exact dataset depends on the purpose of the registry.

Population registries and clinical registries are different

A clinical registry describes people who reach a participating service. A population registry aims to capture disease across a defined population.

Clinical registries are easier to build but may miss people who never reach specialist care.

Why this matters globally

The World Health Organization’s 2025 Global Status Report on Neurology identified major gaps in neurological information systems across countries.

Incomplete data make it harder to measure progress toward the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031.

Mortality surveillance is especially weak

Epilepsy-related deaths can be recorded under several categories, including sudden unexpected death in epilepsy (SUDEP), status epilepticus, drowning, accidents and suicide.

In 2026, the International League Against Epilepsy launched a global survey specifically to identify gaps in how epilepsy-related deaths are investigated and recorded.

Death certificates can underestimate epilepsy

Epilepsy may contribute to a death without appearing as the underlying cause on the death certificate.

Classification practices also vary between jurisdictions.

SUDEP is difficult to count accurately

Accurate SUDEP surveillance often requires information from medical records, circumstances of death and sometimes post-mortem examination.

Where autopsy rates are low or epilepsy history is not known to investigators, cases can be missed.

Hospital data are incomplete

Hospital admissions capture severe disease but do not represent everyone with epilepsy.

People managed in primary care, community settings or outside the formal health system may never appear in hospital datasets.

Resource-limited settings

In places with limited neurological services, epilepsy may be underdiagnosed, misclassified or never formally recorded.

This can make the apparent prevalence lower than the true burden.

Different definitions create different numbers

Studies may define active epilepsy, lifetime epilepsy, treated epilepsy and drug-resistant epilepsy differently.

Comparisons between countries therefore require careful attention to methodology.

Electronic health records

Electronic records can support surveillance, but diagnostic codes alone are imperfect.

Algorithms often need validation against clinical records to distinguish epilepsy from acute symptomatic seizures, febrile seizures or historical diagnoses.

Data quality and equity

Registries must consider who is missing from the dataset.

Remote populations, displaced people, migrants, people without insurance or formal identification, and people relying on non-specialist services may be systematically undercounted.

Privacy and governance

Epilepsy registries contain sensitive health information.

Good governance requires clear consent or lawful authority, secure data handling, appropriate access controls and transparency about how information will be used.

International collaboration

Shared definitions and compatible datasets can allow countries to compare outcomes and study rare epilepsy syndromes that no single centre sees often enough.

However, harmonisation should not erase local context or community governance.

The central point

If epilepsy is not counted accurately, gaps in diagnosis, treatment and mortality remain partly invisible. Registries and surveillance systems are therefore part of epilepsy care, not merely research infrastructure.

Sources

Evidence checked: September 2026.