Genetics of Epilepsy and Related Disorders Study

This is an observational study at Boston Children's Hospital looking into the genetic causes of epilepsy and related conditions. Researchers are using exome and/or whole genome sequencing (a test that looks at your DNA) to identify genetic changes that might contribute to epilepsy. The goal is to better understand why epilepsy affects people differently and to improve diagnosis and treatment. You may be able to join if you have an epilepsy diagnosis and are a patient at Boston Children's Hospital. You cannot join if you already have a known genetic cause for your epilepsy or a structural problem in your brain. The study aims to identify new or existing genetic changes over a 10-year period. The current recruitment status is unclear.

Study design
This is an observational study with a planned enrollment of 5000 participants. It is not specified if it is randomized or blinded.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The primary goal is measured at 10 years, suggesting a long-term follow-up.

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NCT01858285

Genetics of Epilepsy and Related Disorders

Recruiting
Not specifiedAll AgesObservational
Boston Children's Hospital
~5,000 participants
Updated 2026-01-09 on ClinicalTrials.gov
What's tested:Exome and/or whole genome sequencing

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Identify new or existing pathogenic variants through exome and/or whole genome sequencing of individuals with epilepsy.
Measured over 10 years
Epilepsy
Epileptic Encephalopathy
1 sites across 1 states
Massachusetts1
  • Alissa D'Gama, MD, PhD · PRINCIPAL_INVESTIGATOR · Boston Children's Hospital

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  • Identify new or existing pathogenic variants through exome and/or whole genome sequencing of individuals with epilepsy.10 years

    Use exome and/or whole genome sequencing to identify genetic variants. Detailed clinical information will be collected via medical records and patient questionnaire, as well as biological parents' exome sequencing to classify variants per ACMG guidelines.