A modern prognostic model helps determine the risk of epilepsy after stroke

Scientists from 15 countries, led by Amsterdam UMC, have developed a way to predict which patients are at risk of developing epilepsy after cerebral venous sinus thrombosis (CVT). CVT is a type of stroke that usually affects women between the ages of 20 and 50. The predictive model is now freely available worldwide, and the research on which it is based has been published in a journal today JAMA Neurology.

We hope that as many physicians as possible will apply this result to better treat and educate CVT patients around the world.”

Jonathan Coutinho, principal investigator and neuroscientist at Amsterdam UMC

CVT occurs when a clot blocks the veins that drain blood from the brain, preventing blood from draining properly. In the Netherlands, it affects 250 people every year, three-quarters of them women, and mainly affects younger people, aged 20 to 50. One in ten of these patients develop epilepsy after a stroke, often months later, as a result of brain damage.

“These patients usually have to take medication for life, and epilepsy obviously has a negative impact on their quality of life. Until now, it was not possible to predict which patients were at the highest risk of developing epilepsy after sinus thrombosis,” says Coutinho.

Due to the relative rarity of the disease, it is challenging to collect data from sufficient numbers of patients. That’s why the Amsterdam UMC team collaborated with researchers from 15 countries, including more than 10 centers in the United States. Together, they analyzed data from more than 2,000 patients from 1994 to 2022, focusing on data from patients who developed epilepsy between 7 days and 3 years after stroke.

By predicting which patients are at higher risk of developing epilepsy, health care providers also learn which patients are likely to need antiepileptic drugs in the long term. This makes it easier to develop personalized treatment plans and allows the treatment team to prepare the patient for possible future seizures. The patient can then take precautions, for example by stopping driving.

“Since the disease mainly affects women at an age when they are mid-career and perhaps starting a family, it is significant for them to know whether they should consider epilepsy,” explains Coutinho.

“We hope that this result will also support healthcare professionals provide guidance to patients with CVT and contribute to further research into antiepileptic drug treatment. Ultimately, we want to completely prevent epilepsy after CVT,” he adds. The results of this study and the global availability of the prognostic model online demonstrate the power of international academic collaboration, especially for infrequent diseases where there are few patients in each country.

How does the DIAS3 score prediction model work?

Based on 6 indicators, it is possible to predict the risk of epilepsy in a specific patient after this type of stroke. These data are already routinely collected in patients with CVT. The model used 6 indicators: (1) age, (2) cerebral hemorrhage, (3) seizures in the first 7 days, (4) status epilepticus (seizure that does not stop on its own) in the first 7 days. days, (5) subdural hematoma (bleeding between the two outer membranes of the brain), and (6) surgery to (partially) lift the skull to prevent brain swelling. With this data, the computational model can predict the individual risk of epilepsy in each patient.

The DIAS3 score is available online to all healthcare providers worldwide through the International Cerebral Venous Thrombosis Consortium website.