Abstracts

Rationale: EpiNet has been established to facilitate clinical research in epilepsy. The EpiNet study group is undertaking an international case-control study of SUDEP. We aim to prospectively identify 200 people with epilepsy (pwe) who die from SUDEP, and compare epilepsy variables with 800 matched controls who have epilepsy and who have not died from SUDEP.

The EpiNet database can be used by any group who wish to study SUDEP. The website allows physicians anywhere in the world to collect information in a standardised way. We are using the database in New Zealand (NZ) to prospectively collect data on all pwe who die from SUDEP. We started the registry in August 2019.

Methods: The objectives of the SUDEP registry study are to determine:
i) the incidence of SUDEP in New Zealand, and how this changes over time;
ii) risk factors associated with SUDEP

We are identifying patients who die of SUDEP from multiple sources: doctors, coroners, pathologists, epilepsy support staff, families of pwe, and Ministry of Health national datasets. All coroners in New Zealand have agreed to inform us of all pwe who die suddenly. All cases are reviewed by two neurologists and at least one pathologist, and information about the death is entered into the mortality registry in EpiNet. We review the patient’s hospital records to confirm the diagnosis of epilepsy, and contact the patient’s general practitioner to see if there may be an alternative cause of death.

The research coordinator and/or the epilepsy fellow attempt to contact families of people who have died from SUDEP anywhere in NZ. Cases are assessed according to the Devinsky criteria (Epilepsia 2018;59(6):1220-33).

The study has been approved by the Northern A Health and Disability Ethics Committee of NZ.

Results: During the first 27 months of the study (08/01/2019 to 10/20/2021) we were notified of 156 pwe who died suddenly. On review of these cases, we concluded that 72 of the patients died from Definite or Definite-plus (45), Probable (10), or Possible SUDEP (16) with one unclassified SUDEP. 31 patients had a cause of death other than SUDEP, and 57 deaths remain under review.

Age at death was: < 20 yr (7), 20-29 (22), 30-39 (12), 40-49 (7), 50-59 (15), >60 (9).

Eight of these patients have also been included in the International Case-control study of SUDEP.

New Zealand’s estimated resident population at 30 June 2020 was 5,084,300. (Statistics NZ) This gives a crude incidence of SUDEP for New Zealand of 6.3/million of population per year.

Conclusions: The estimated incidence of SUDEP for NZ is at least 6.3/million per year of population. The actual number of pwe in NZ is uncertain, and the rate of SUDEP in relation to the number of pwe remains to be determined. We confirm that SUDEP affects young adults in particular. We will continue collecting prospective data, to monitor the incidence over time and determine whether changes in management of epilepsy reduce the rate of SUDEP.

Neurologists from other countries are encouraged to use the EpiNet platform to monitor SUDEP cases in their own regions.

Funding: Please list any funding that was received in support of this abstract.: Neurological Foundation of NZ, the Auckland Medical Research Fund, and the Health Research Council of NZ.