Page last updated November 12, 2025
ClinicalTrials.gov#: NCT05374824
Study Design: Retrospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Patient partners or engagement
Principal Investigator: Sandi Lam
Institution: Lurie Children's Hospital
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2021
Study Duration: 2022 – 2025
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, PaTH, PEDSnet, STAR
Therapeutic Area: Neurology
Condition: Lennox-Gastaut Syndrome
Age Range: up to 25 Years (Child, Adult)
Status: Recruiting
Research Question(s):
- Which treatment options are most likely to improve important clinical outcomes in my child (or patient) with LGS?
- My child has hundreds of seizures a week, and multiple different drugs have failed to get her seizures under control. What is the best possible next step?
Primary Publication(s):
Lam S, Rosenman M, Dixon-Salazar D, et al. Comparative effectiveness of epilepsy surgery versus additional anti-seizure medications for Lennox-Gastaut syndrome: study protocol for a multicenter, mixed-methods study. Front Neurol 2025;16:1569551. doi: 10.3389/fneur.2025.1569551
Bliss ND, Patel AD, Dixon-Salazar T, et al. Patient family engagement and partnership: Pilot survey results in assessing behavior, communication, and quality of life in children with Lennox-Gastaut syndrome and other drug-resistant epilepsy. Epilepsy Behav 2023;148:109451. doi: 10.1016/j.yebeh.2023.109451
Votoupal M, Muller R, Patel AD, et al. Navigating the diagnosis: A survey on caregivers' journeys to Lennox-Gastaut syndrome. Epilepsy Behav 2025;171:110600. doi: 10.1016/j.yebeh.2025.110600
