Genetics of Epilepsy and Related Disorders

NCT ID: NCT01858285

Last Updated: 2026-01-09

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

5000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2010-11-30

Study Completion Date

2030-12-31

Brief Summary

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Investigators at Boston Children's Hospital are conducting research in order to better understand the genetic factors which may contribute to epilepsy and related disorders. These findings may help explain the broad spectrum of clinical characteristics and outcomes seen in people with epilepsy.

Detailed Description

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Many individuals with epilepsy experience seizures which respond well to treatment. Some types of epilepsy, however, are characterized by seizures which begin very early in childhood and are associated with severe intellectual and/or developmental disabilities. These conditions are often difficult to treat.

The investigators' research effort is focused on identifying genetic changes (known as "DNA variants") that cause epilepsy. By doing so the investigators hope to improve diagnosis and treatment for this epilepsy.

We have two specific aims:

1. Identifying genetic findings in patients with epilepsy and related disorders.
2. Correlating genetic findings with epilepsy phenotypes.

Conditions

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Epilepsy Epileptic Encephalopathy

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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BCH Children's Rare Disease Cohort (CRDC)

Individuals with epilepsy, onset at any age. Must be followed clinically at Boston Children's Hospital. Research trio-based exome and/or whole genome with CLIA confirmation of diagnostic findings. Exclusions include presence of existing genetic diagnosis or known cause for epilepsy, presence of structural brain malformation.

Exome and/or whole genome sequencing

Intervention Type GENETIC

Interventions

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Exome and/or whole genome sequencing

Intervention Type GENETIC

Eligibility Criteria

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Inclusion Criteria

inclusion: diagnosis of epilepsy, patient at Boston Children's Hospital exclusion: existing genetic diagnosis or known cause for epilepsy, structural malformation of the brain, not seen at Boston Children's Hospital
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Boston Children's Hospital

OTHER

Sponsor Role lead

Responsible Party

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Alissa D'Gama

Assistant Professor of Pediatrics

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Alissa D'Gama, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Boston Children's Hospital

Locations

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Boston Children's Hospital

Boston, Massachusetts, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Lacey Smith, MS, CGC

Role: CONTACT

857-218-3239

D'Gama Lab

Role: CONTACT

Facility Contacts

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Lacey Smith, MS,CGC

Role: primary

857-218-32395533

Lacey Smith, MS, CGC

Role: backup

617-355-5254

Related Links

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https://www.childrenshospital.org/programs/epilepsy-genetics-program

Epilepsy Genetics Program at Boston Children's Hospital website

Other Identifiers

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X10-04-0197

Identifier Type: -

Identifier Source: org_study_id

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