This research study is aimed at better understanding epileptic encephalopathies such as Infantile Spasms and Lennox-Gastaut syndrome. Our primary goal is to investigate predictors of epilepsy to better understand the underlying biology of epileptic encephalopathies. The research aims to link genetics and baseline clinical variables to long-term clinical outcomes, and we hope that by discovering the genetic causes of infantile spasms and other epileptic encephalopathies, our research could lead to earlier diagnosis, intervention, and improved outcomes.
What is involved?
- Blood draw
- Sharing of medical records
- Cognitive testing and questionnaires
- Phone interviews
- A total of 3-6 hours of participating
Who can participate?
- People with a diagnosis of an epileptic encephalopathy and both parents
- If under 18, parent/guardian MUST participate along with minor
How to participate?
- Complete the following web-based Initial Interest Intake form: https://redcap.ucsf.edu/surveys/?s=yId9Sb7dPe
- Once completed, a research coordinator will contact you to review eligibility requirements and enrollment procedures.
- You can also contact the study team directly: (415) 502-8039 or Veronica.deSantiago@ucsf.edu.