Special Interest Groups
SIG related to WG7

Clinical Trials Outcomes for Seizure Severity Assessment

What is this Special Interest Group about?

This Special Interest Group (SIG) was created to address a major gap in clinical trial design for epilepsy: the lack of standardized and meaningful measures of seizure severity. While most trials rely on seizure frequency as the primary outcome, this does not adequately capture the real-life impact of epilepsy on patients’ quality of life.

Current Activities

  • Initial mapping of existing seizure severity scales
  • Identification of key domains (clinical signs, patient-reported symptoms, psychosocial impact)
  • Creation of subgroups to work on population-specific tools
  • Inclusion of patient advocacy representatives (ePAGs) in the development process

Leaders

Pr. Andreas Schulze-Bonhage

Freiburg, Germany

The main goals

  • Explore and define relevant domains and criteria to assess seizure severity in clinical trials
  • Compare existing scales and identify limitations, especially in rare and complex epilepsies
  • Develop improved, patient-centered assessment tools combining objective signs and subjective experiences

Core group

Related material and links

If you are interested to voluntarily contribute to this SIG activities, please use the contact form to let us know.