SUDEP¶
Status: started September 2026. This page is student-written from public sources and has not yet been reviewed by a clinician or the Epilepsy Foundation of Minnesota; we are seeking that review. Nothing here is medical advice.
The gap¶
Sudden Unexpected Death in Epilepsy is rare, about 1.2 in a thousand adults with epilepsy a year and lower in children (guideline of the American Academy of Neurology and the American Epilepsy Society, Harden et al. 2017), and it is the outcome every family fears. The Minnesota Department of Health reports around 1,000 deaths a year in the state related to epilepsy or seizures; our own pull of 2018 to 2024 death certificates gives about 870 a year that mention epilepsy or seizures, and about 200 a year that mention epilepsy specifically. How many are SUDEP, nobody knows. It has no diagnostic code, so it is counted only when a certifier writes the words on the death certificate. Illinois and New York require medical examiners to look for it and report cases to the North American SUDEP Registry. Colorado passed a law in 2026 under which, from July 2027, a death consistent with SUDEP must list epilepsy on the certificate. Minnesota has no such rule.
Since January 2024 Minnesota Medical Assistance has covered seizure detection devices, wearables that alert a caregiver to a convulsive seizure. The Epilepsy Foundation of Minnesota described the 2023 law as the first of its kind in the nation. Nobody has published how many families use it.
What the death data shows¶
We pulled every Minnesota death certificate from 2018 to 2024 that mentions epilepsy or seizures, from the CDC's multiple cause of death files.
| 2018 to 2024, Minnesota residents | Deaths | Per year |
|---|---|---|
| Any mention of epilepsy or seizures on the certificate (G40, G41, R56) | 6,077 | about 870 |
| Any mention of epilepsy (G40, G41) | 1,404 | about 200 |
| Epilepsy as the underlying cause of death | 415 | about 59 |
The two broader counts rose across the seven years, from 728 to 967 for any seizure mention and from 153 to 233 for any epilepsy mention. Deaths with epilepsy as the underlying cause did not trend up, going from 60 in 2018 to 55 in 2024. After the first year of life, rates are low through childhood. They rise steadily through adulthood and climb steeply after 65, when seizures ride along with strokes, dementia, and other conditions. The epilepsy-specific count peaks at ages 65 to 74.
These coded files cannot separate SUDEP from other epilepsy deaths. Only 27 of 87 counties had enough epilepsy-specific deaths in seven years to report a number at all. Fifty-seven are suppressed as fewer than 10, and three had none recorded. Source: CDC WONDER, Multiple Cause of Death, 2018 to 2024.
How often SUDEP is written on a certificate¶
At our request, the Minnesota Center for Health Statistics at the Minnesota Department of Health searched the cause-of-death text on Minnesota residents' death certificates from 2011 to 2024 for SUDEP and its spelled-out forms.
| Years | Certificates that name SUDEP |
|---|---|
| 2011 to 2015 | 8 |
| 2016 to 2019 | 23 |
| 2020 to 2024 | 43 |
| Total | 74 |
Sixty-three of the 74 people were under 45. Sixty of the deaths kept an epilepsy code as the underlying cause. The other 14 were coded to a different condition, such as a brain malformation or cerebral palsy, so a count built on epilepsy codes alone would miss them.
This is a count of certificates, which is different from a count of SUDEP deaths. A death certificate is the certifier's opinion from the information available at the time. The table cannot show how many SUDEP deaths went unnamed, or why. The rise across the three periods is consistent with medical examiners following the 2018 recommendations of the National Association of Medical Examiners on naming SUDEP, and may not reflect any change in how often it happens. Practice also varies across the state. Some counties are served by forensic pathologists and others by coroners with smaller budgets for autopsies. Source: Minnesota Department of Health, Minnesota Center for Health Statistics, death certificate data, custom tabulation for EDAN, October 2026.
Where these deaths happen, and how Minnesota compares¶
In a Swedish study of 329 SUDEP deaths, 91 percent happened at home, 58 percent at night, and 17 percent were witnessed (Sveinsson et al., Epilepsia 2018). The coded death files do not record those circumstances. The closest public measure is where people died, and for younger Minnesotans that pattern is stark.
| Minnesota, 2018 to 2024 | Died at home | Total |
|---|---|---|
| Epilepsy mentioned anywhere on the certificate, all ages | 458 (33%) | 1,404 |
| Epilepsy mentioned anywhere, ages 1 to 44 | 169 (54%) | 311 |
| Epilepsy as the underlying cause, ages 1 to 44 | 98 (64%) | 152 |
Nearly two in three young Minnesotans whose deaths were caused by epilepsy died at home. Of the 74 Minnesota certificates that name SUDEP, 63 were for people under 45. Place of death is only a proxy, though. Dying at home is not proof of SUDEP, and some SUDEP deaths happen elsewhere.
Minnesota's epilepsy death rate also runs above the national one. Counting every death certificate that mentions epilepsy anywhere, not only those where it was the underlying cause, Minnesota's age-adjusted rate for 2018 to 2024 is 3.0 per 100,000 against 2.4 nationally, about 25 percent higher. Minnesota is clearly above Wisconsin, North Dakota and the United States. Iowa is marginal, since its interval touches ours at 2.9. South Dakota is the only neighbor with a higher estimate, 3.4, and its interval overlaps ours, so we cannot say the two states differ.
One caution before reading too much into that gap. A state's rate depends partly on how often doctors write epilepsy on a death certificate, which varies. A higher rate may mean more deaths, better recording, or both. Source: CDC WONDER, Multiple Cause of Death, 2018 to 2024.
Explore: every count in one place¶
The figures above, and the breakdowns behind them, in one page: totals, by year, by age, by place of death, the certificates that name SUDEP, that count beside the number expected from published rates, and Minnesota beside its neighbors.
What we are doing this year¶
- A public-records request to find out how many devices Medical Assistance has covered, so the benefit can be measured.
- Keeping the death analysis above current each year as CDC releases data, and adding regional groupings so rural rates can be shown without breaking suppression rules.
- A draft Minnesota SUDEP investigation and reporting law, modeled on Illinois, for the Epilepsy Foundation of Minnesota and the authors of the 2025 epilepsy program law. Its data would feed the mortality count the state is now required to publish.
Who uses this data¶
The death counts and device claims are meant for the Epilepsy Foundation of Minnesota, the Danny Did Foundation and the legislators who wrote the 2025 epilepsy program law. Families with questions about SUDEP or seizure alert devices can reach the Epilepsy Foundation of Minnesota or the Danny Did Foundation.
Note
Questions about your own or your child's risk belong with your neurologist. This page publishes what the public data shows and what Minnesota does not currently record.