Novel calculator predicts risk of epilepsy after rare stroke

A blood clot in the cerebral venous system (cerebral venous thrombosis) is a rare but important cause of stroke. In Sweden, around 150 individuals are affected each year, typically affecting women between the ages of 20 and 50. One in three patients experiences a seizure during the acute phase. Predicting who is at high or low risk of recurrent seizures, epilepsy, is complicated.

In an international collaboration between fifteen centers across three continents, researchers from Sahlgrenska Academy at the University of Gothenburg and Sahlgrenska University Hospital have developed a practical calculator that quickly calculates the risk of developing epilepsy at the onset of the disease. The results of the multi-center study are now presented in JAMA Neurology and the tool is made freely available.

Important to predict the aftermath

First author of the study is Erik Lindgren Bogdanoff, researcher at the Section of Clinical Neurosciences, Sahlgrenska Academy at the University of Gothenburg, and Resident Physician in Neurology at Sahlgrenska University Hospital.

"The calculator predicts the risk of epilepsy based on factors that are already available in clinical routine when the person is hospitalized, there is therefore no need for additional tests or investigations," he says, and he continues:

"For those affected by sinus thrombosis, it is very important to know what the aftermath looks like. Priorly, we have not able to predict what patients have the highest risk of developing epilepsy after cerebral venous thrombosis." With a high predicted risk of future seizures, preventive medication can be considered in consultation between doctor and patient.

Erik Lindgren Bogdanoff emphasizes that although epilepsy could have negative impact on the quality of life, most people with epilepsy are able to pursue their life normally even with diagnosis of epilepsy. However, without the proper treatment, seizures can be so severe that they require hospitalization. It is hoped that the calculator can be used by physicians worldwide to support treatment decisions or inform patients about risks, and can be used in future studies on preventive treatment with medicine.

Can improve care for young people

The study is based on registry data from the International Cerebral Venous Thrombosis Consortium (ICVTC) and the results have since been confirmed in two additional independent registries: the US ACTION-CVT and the Israeli CVT Study. In total, data from over 2,000 individuals have been analyzed.

"The involvement of research participants, together with extensive international collaboration, has been a prerequisite for obtaining sufficient data and conducting studies despite being a rare disease, which provide results that can be translated into clinical practice. Although the disease itself is relatively rare, it is important to improve care for those affected. The results are a step towards more person-centered care for young people affected by stroke," says Erik Lindgren Bogdanoff.