Measuring the true impact of Epilepsy

A Patient-Centered Approach

Elabbasy’s research is part of the AIM@EPILEPSY project, funded by the Dutch Research Council (NWO, project number KICH1.ST03.21.016). This collaborative initiative involves partners such as Maastricht University Medical Centre+ (MUMC+), Kempenhaeghe, EpilepsieNL, TU Delft and Clinical Neuro Science Projects (CNSp). Her focus lies on understanding the costs associated with epilepsy and its impact on quality of life for both patients and caregivers.

“For many of the 120,000 people in the Netherlands living with epilepsy, seizures are just one part of the challenge,” Elabbasy explains. “Drug-Resistant Epilepsy affects approximately 30% of patients, leaving them with limited treatment options and significant disruptions to their daily lives.”

To address these issues, Elabbasy is conducting a nationwide survey involving 330 patients and their caregivers. The data collected will provide critical insights into how epilepsy interferes with work, relationships, mental health, and financial security.

Driving Change Through Data

One of the most significant gaps in epilepsy care is the lack of comprehensive data on its societal burden. Elabbasy’s research seeks to fill this void, providing evidence that can inform clinical practices and policy decisions.

“Without this data, it’s challenging to advocate for better care or prioritize epilepsy on healthcare agendas,” she notes. “Our findings will not only support improved treatments but also help policymakers understand the true cost of epilepsy.”

Get Involved

Elabbasy is currently seeking participants for her survey to ensure a diverse range of experiences is captured. If you or someone you know is living with epilepsy or supports someone who is, your input could make a meaningful difference in shaping future care strategies.

Click here for more information or to participate in this research.

Together, we can work toward improving the lives of those affected by epilepsy—one step at a time.