Lennox-Gastaut Syndrome Treatment Decision Study

PI(s): Anne Berg and Marc Rosenman 

Project Summary: In order to inform decision-making about treatment for Lennox-Gastaut Syndrome (LGS), researchers aim to determine the impact of Palliative Surgical Therapy (PST) and LGS-approved anti-seizure medications (LGS-ASM) on key clinical outcomes in children with LGS. Additionally, this study will delineate patterns of utilization for palliative surgical therapies for LGS and knowledge-attitude-practice barriers to their use. Eighteen PCORnet sites will contribute data to help researchers identify variation in practice due to site, trends over time, and variation in treatment practices by child's age, race, ethnicity, and insurance type. Through a mixed-methods, qualitative to quantitative approach at 8 sites, researchers will identify gaps in knowledge, attitudes, and practice among stakeholder communities that, if filled, could result in more optimal utilization of medical versus surgical therapies for LGS.

Study Design: Multi-CRN Data only Observational

PaTH Partners:

  • Johns Hopkins University (Harold Lehman and Eric Kossoff, Site co-PIs)
  • University of Michigan (Renee Shellhaas, Site PI)
  • University of Pittsburgh (Taylor Abel, Site PI)

Sponsor: PCORI®

Coordinating Center: Lurie Children’s Hospital

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