Seizure Tracker - Epilepsy: It’s not just Seizures™
Seizure Success® and You!


The Seizure Tracker "IT’S NOT JUST SEIZURES™" (INJS) initiative focuses on building tools to help manage all aspects of living with seizures.

As a community, we know that seizures and related therapies can impact our lives in many ways. Help us build tools to manage all aspects of your quality of life, not just seizures. Seizure Tracker is following standard guidelines for developing a common list of issues or Core Outcome Set for people with living with seizures. Our goal is to leverage this list in providing you a way to understand the impact epilepsy has on you and your family as a whole.


A core outcome set (COS) is an agreed-upon, standardized list of quality-of-life issues our community agrees epilepsy doctors should ask about in clinic/hospital visits when seeing a person living with epilepsy.

Domain MapSeizure Tracker® "IT'S NOT JUST SEIZURES™" initiative stages:
  • Identify factors (other than seizures) that impact quality of life.
  • Prioritize these factors and understand how priorities change among different subgroups within the epilepsy population.
  • Make the prioritized list public so we can better understand the full impact of epilepsy on individuals and families.
  • Build tools to help manage epilepsy more holistically.

The current quality of life items list was developed through group discussions and past surveys with patients and care providers dealing with a broad spectrum of issues related to epilepsy. With your help, we will continue the effort to prioritize the items according to how they impact you!

Seizure Tracker® "IT’S NOT JUST SEIZURES™" community collaborators:

Unversity of California - San Francisco

TSC Alliance

Child Neurology Foundation

Dup15q Alliance

Dravet Syndrome Foundation

LGS Foundation

STXBP1 Foundation

Please contact us at if you have questions about the INJS initiative or would like to join the collaboration.
INJS Words
INJS focus areas...
  • Mood
  • Language
  • Memory
  • Control over your emotions and events around you
  • Stigma
  • Social limitations
  • Anti-seizure medication side effects
  • Seizure severity
  • Impact on ability to function
  • Sense of control over epilepsy
  • Cognition (Thinking ability)
  • Patient perceptions about family impact
  • Fear from seizures
  • Sleep quality
  • Ictal and postictal semiology
  • General health
  • Impact on family
  • Work/school limitations
  • Healthcare utilization
  • Behavior
  • Overall quality of life
  • Womens' health
  • Epilepsy technology
  • Barriers to healthcare access
  • Financial impact
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