Seizure Success® and You!

Epilepsy: IT’S NOT JUST SEIZURES™

www.seizuretracker.com

As a part of the Seizure Tracker "IT’S NOT JUST SEIZURES™" (INJS) initiative, we are asking that you participate in this important set of surveys.



As a community, we know that seizures and related therapies can impact our lives in many ways.

The Seizure Tracker INJS initiative aims to better understand the full impact of epilepsy on you and your family. That knowledge will help us build tools to manage all aspects of your quality of life, not just seizures.




We need your help...

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The more participation we get in this effort, the more valuable the data will be in creating new tools for you to use on Seizure Tracker. Please consider sharing this page with your community or posting it on social media.
Domain MapSeizure Tracker® "IT'S NOT JUST SEIZURES™" project 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 robust interactions 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!

Survey structure...
Seizure Tracker® "IT’S NOT JUST SEIZURES™" community collaborator:

Unversity of California - San Francisco

Tuberous Sclerosis Alliance

Child Neurology Foundation

Dup15q Alliance

Dravet Syndrome Foundation

Gould Syndrome Foundation

LGS Foundation

My Epilepsy Story

STXBP1 Foundation

TESS Research Foundation

Please contact us at info@seizuretracker.com if you have questions about the INJS initiative or would like to join the collaboration.
INJS Words
Topics included in the INJS QOL survey...
  • 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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