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Lurie Children’s Home Specialties & ConditionsEpilepsy Program Clinical Research

Pediatric Epilepsy Clinical Research

Here at Lurie Children’s, our research team works tirelessly to bring our patients and families an abundance of research opportunities, in a mission to discover new cures, every day. Our multidisciplinary team of physician-scientists conduct various research projects to help promote patient care and better educate families. We participate in studies funded by the National Institute of Health (NIH), pharmaceutical companies and our own investigator-initiated studies. We hope our research efforts will improve treatment for children with epilepsy.

Current Epilepsy Center Studies

An Open-Label Extension Study for Patients with Dravet Syndrome who Previously Participated in Studies of STK-001

Natural History Study of Infants and Children with SCN1A-positive (SCN1A+) Dravet (ENVISION)

PRAX-562-221: A Phase 2, Double-Blind, Randomized Clinical Trial to Explore the Safety, Tolerability, Efficacy, and Pharmacokinetics of PRAX-562 in Pediatric Participants with Developmental and Epileptic Encephalopathies Followed by an Open-Label Extension

ENDEAVOR: A Clinical Study to Evaluate the Safety and Efficacy of ETX101, an AAV9-Delivered Gene Therapy in Infants and Children with SCN1A-positive Dravet Syndrome

Stopping TSC Onset and Progression 2B: Sirolimus TSC Epilepsy Prevention Study (TSC-STEPS) Study

Copper Histidinate Treatment for Menkes Disease

Collection and Banking of Genetically Annotated Biospecimens

  • IRB #: 2017-1331 
  • Study Contact: Enrique Rojas, erojas@luriechildrens.org
  • PI: Dr. Divakar Mithal
  • Description: The purpose of this research study is to collect and store tissue, cerebrospinal fluid (CSF), blood, urine samples and clinical information so that researchers can help find the causes of and new treatments for seizures through genetic testing.    

Evaluation of Induced Pluripotent Stem Cells and Cell Physiology in Children with Intractable Epilepsy Secondary to Ion Channel Mutations

  • IRB #: 2015-738
  • Study Contact: Enrique Rojas, erojas@luriechildrens.org
  • PI: Dr. Linda Laux 
  • Description: This study is being done to learn more about ion channel mutations in children and adults with epilepsy. This study is also being done to learn more about how ion channel mutations affects brain cells to cause seizures and to learn more about which medication may be helpful in treating seizures and to discover new medications for the treatment of epilepsy.

A Learning Healthcare System for Pediatric Epilepsy

  • IRB #: 2018-1909
  • Study Contact: Abigail Van Nuland, avannuland@luriechildrens.org
  • Description: This study is designed to create a "learning healthcare system" for pediatric epilepsy, in which clinical data are collected, analyzed, and rapidly disseminated to change practice and improve outcomes. This is a multicentered collaborative group of pediatric epilepsy clinicians and researchers who are working to develop algorithms to identify individuals with specific subtypes of epilepsy and create an active registry of children with epilepsy. 

A 20-Week Multicenter, Randomized, Double-Blind, Placebo Controlled Trial of EPX-100 (Clemizole Hydrochloride) as Adjunctive Therapy in Patients with Dravet Syndrome (ARGUS Trial)

A Phase 2 Randomized, Double-Blind, Placebo-Controlled Study to Evaluate the Efficacy, Safety, Tolerability, and Pharmacokinetics of NBI-921352 as Adjunctive Therapy in Subjects with SCN8A Developmental and Epileptic Encephalopathy Syndrome (SCN8A-DEE)

Epilepsy Big Data Approach: A Multi-Modality, Multi-Compartment, and Multi-Scale Characterization of the Developing Brain

  • IRB Number: 2020-4002
  • Study Contact: Enrique Rojas, erojas@luriechildrens.org
  • PI: Dr. Joyce Wu
  • Description: This study is open for patients undergoing an epilepsy surgery. The goal of this study is to collect and store biospecimens that would otherwise be discarded after surgery. Biospecimens paired with medical and clinical information; this combination of information may begin to help researchers find the causes of and new treatments for epilepsy.

GWEP17005: An Open-label, Randomized Trial to Assess the Safety, Pharmacokinetics, and Exploratory Efficacy of Adjunctive Cannabidiol Oral Solution (GWP42003-P) Compared with Standard of Care Antiseizure Medication, in Patients Age 1 Month to Less Than 12 Months of Age with Tuberous Sclerosis Complex who Experience Inadequately-controlled Seizures

Research Staff

Stefanie McCormack, CCRP

Clinical Research Coordinator

Special Interests: Health literacy, healthcare innovation, community engagement, patient advocacy

Emily Gost

Research Technologist

Special Interests: Neuroscience, Global Public Health, and High Frequency Oscillation research

Sofia Mirshed

Clinical Research Coordinator II 

Prachi Patel

Clinical Research Coordinator

Enrique Rojas

Clinical Research Coordinator

Special Interests: Genetics, stem cells, data science, health technology

Maya Stosic, MD, MBA, CCRP

Manager, Clinical Research

Special Interests: Quality control, budget negotiations, feasibility tool, leadership

Abigail Van Nuland

Research Scientist