Epilepsy Trial, Recruiting
Who may be able to join
AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI
Who might be able to join this trial:
- You or your child has been diagnosed with a genetic condition linked to a Developmental and Epileptic Encephalopathy (DEE), confirmed by the study doctors
- You or your child has a neurological condition such as epilepsy or developmental delay, confirmed by the study doctors
Arm 1 – In-Person visits (New York City):
- The genetic condition involved is specifically MEF2C
- Age is between 0 and 15 years old at the time of joining the study
- You are willing and able to travel to New York City four times over two years
- You are an English speaker
Arm 2 – Virtual visits:
- The genetic condition involved is specifically MEF2C
- Any age is welcome
- You have a reliable internet connection that can support video calls
- You are willing to complete all surveys required by the study
- You are an English speaker
Arm 3 – Online Registry only:
- The genetic condition involved is specifically MEF2C
- Any age is welcome
- You are willing to fill out one online form (any language is accepted)
Arm 4 – In-Person visits (New York City):
- You or your child has any DEE-related genetic condition
- Any age is welcome
- You are willing and able to travel to New York City four times over two years
- You are an English speaker
Arm 5 – Virtual visits:
- You or your child has any DEE-related genetic condition
- Any age is welcome
- You have a reliable internet connection that can support video calls
- You are willing to complete all surveys required by the study
- You are an English speaker
Arm 6 – Online Registry only:
- You or your child has any DEE-related genetic condition
- Any age is welcome
- You are willing to fill out one online form (any language is accepted)
Who may not be able to join:
- You or your child has a significant brain or behavioural condition that is not related to DEE, which could affect the study's results (confirm with trial site)
- You or your child was born prematurely before 35 weeks of pregnancy, or has a history of brain bleeding, a structural brain difference, or a heart condition present from birth
- You or your child has another health condition that the study doctor believes could make it harder to clearly observe the typical effects of DEE (confirm with trial site)
Important: Always verify eligibility with the trial site directly before applying.
Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.
Contact this trial
Principal Investigator: Zachary Grinspan, MD MS, Weill Medical College of Cornell University
Phone: (212) 746-3278
Contact details sourced from ClinicalTrials.gov. Verify directly with the trial site before attending.
GP referral letter
Print a one-page summary to share with your doctor.
Trial details
Where this trial is recruiting
Primary endpoints
Change in Bayley Scales of Infant and Toddler Development (Fourth Edition); Change in Observer-Reported Communication Ability (ORCA); Change in Peabody Developmental Motor Scales 3 (PDMS-3); Change in Pediatric Epilepsy Learning Healthcare System (PELHS); Change in QI-Disability; Change in Children's Sleep Habits Questionnaire (CSHQ); Change in Childhood Autism Rating Scale-2 (CARS-2); Change in Vineland Adaptive Behavior Scales (Third Edition); Change in Communication Function Classification System (CFCS); Change in Alberta Infant Motor Scale (AIMS); Change in Gross Motor Function Measure-88...
Can't join this trial?
Data last synced from ClinicalTrials.gov: 14 July 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.