Epileptic Encephalopathy Database

Protocol Description

The purpose of this Children’s Hospital of Pittsburgh of UPMC-based observational research study is to collect and analyze information about patients diagnosed with epileptic encephalopathy during early childhood to identify risk factors that may influence short-term and long-term treatment response and cognitive outcome. Epileptic encephalopathies are conditions in which severe abnormalities of brain electrical activity, as measured by electroencephalography (EEG), may contribute to progressive cognitive and/or developmental decline.

Eligibility Criteria

The study is accepting children of both genders from birth to age 3 being seen at Children’s for new onset epileptic encephalopathy.
Males and Females: Infant to age 3


Parents or guardians of enrolled participants will complete 2 to 3 questionnaires for the assessment of development and behavior, including a screening for autism spectrum disorders. Questionnaires take 5 to 10 minutes to complete and can be done during scheduled routine clinical visits or over the telephone. Additionally, researchers will review patient medical records, including prior EEG, blood tests, imaging, and other test results, for use in compiling the database. (No study-specific lab work or medications are required.) Researchers will follow up every 3 to 6 months by telephone or in the Neurology clinic to update patient health information.
Visits: None beyond normal clinical care
Duration: Participants may be followed up to age 5, depending on condition.

Status: Open to Enrollment

Primary Investigator

Yoshimi Sogawa, MD

Contact Information

For more information about the study or enrollment, please contact:
Yoshimi Sogawa, MD