Study Results
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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COMPLETED
4150 participants
OBSERVATIONAL
2007-11-30
2018-10-31
Brief Summary
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Detailed Description
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The Epilepsy Phenome/Genome Project (EPGP) is a large-scale, international, multi-institutional, collaborative research project aimed at advancing the understanding of the genetic basis of the most common forms of epilepsy.
The overall goal of EPGP is to collect detailed, high quality phenotypic (i.e., characteristics of individuals, from the molecular level to the whole person) information on persons with epilepsy and to compare the phenotypic information with genomic information. EPGP will provide a resource that may lead to many discoveries related to the diagnosis and treatment of epilepsy, including the eventual development of new therapies based on a better understanding of causes of the disorder.
Conditions
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Study Design
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CASE_CONTROL
PROSPECTIVE
Study Groups
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subject
individuals with epilepsy
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* Clear diagnosis of epilepsy, i.e., a lifetime history of two or more unprovoked seizures.
* Age at first unprovoked seizure younger than 40 years.
* High quality clinical and laboratory data (i.e., neuroimaging, EEG) must be available throughout the patient's history
* All patients with localization-related epilepsy (LRE) or idiopathic generalized epilepsy (IGE) must have a first-degree relative (parent, child, or sibling) with non-symptomatic (idiopathic or cryptogenic) epilepsy who is willing and available to participate.
* All patients with infantile spasms (IS), Lennox-Gastaut syndrome (LGS), or malformations of cortical development (MCD) must have both biological parents available and willing to participate.
Exclusion Criteria
* Exclusively febrile seizures or other acute symptomatic seizures.
* Identified antecedent cause of epilepsy (i.e., a structural or metabolic insult to the CNS prior to the first unprovoked seizure, such as stroke, brain tumor, severe head trauma, etc., or a progressive neurodegenerative disorder).
* Recognized genetic syndrome (e.g., tuberous sclerosis, neurofibromatosis, Rett's or Angelman's syndromes) or chromosomal abnormality. (e.g., aneuploidies, unbalanced translocations, or chromosomal deletions and duplications detectable by conventional medical karyotyping).
4 Weeks
60 Years
ALL
No
Sponsors
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National Institute of Neurological Disorders and Stroke (NINDS)
NIH
University of California, San Francisco
OTHER
Responsible Party
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Principal Investigators
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Daniel Lowenstein, MD
Role: PRINCIPAL_INVESTIGATOR
University of California, San Francisco, Department of Neurology
Ruben Kuzniecky, MD
Role: PRINCIPAL_INVESTIGATOR
New York University, Comprehensive Epilepsy Center
Locations
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University of Alabama at Birmingham, Epilepsy Center, 1719 6th Ave S, CIRC, Ste 312
Birmingham, Alabama, United States
Mayo Clinic College of Medicine Arizona
Phoenix, Arizona, United States
University of California, San Francisco, 400 Parnassus, Room 847
San Francisco, California, United States
The Children's Hospital
Denver, Colorado, United States
Mayo Clinic College of Medicine Florida
Jacksonville, Florida, United States
Rush Presbyterian St. Luke's Medical Center, 1653 West Congress Parkway
Chicago, Illinois, United States
Johns Hopkins University, Meyer 2-147, 600 North Wolfe Street
Baltimore, Maryland, United States
Children's Hospital Boston, 300 Longwood Ave.
Boston, Massachusetts, United States
University of Michigan Medical Center, Department of Neurology, 5021 BSRB, 109 Zina Pitcher Place
Ann Arbor, Michigan, United States
Mayo Clinic College of Medicine, 200 First St., SW
Rochester, Minnesota, United States
Washington University
St Louis, Missouri, United States
Saint Barnabas Medical Center, Institute of Neurology, 101 Old Short Hills Road, 4th Floor, Suite #415
West Orange, New Jersey, United States
Comprehensive Epilepsy Center, NYU Medical Center, 403 E. 34th Street, 4th Floor
New York, New York, United States
Gertrude H. Sergievsky Center, Columbia University, 630 West 168th Street, P&S Box 16 (no patient enrollment)
New York, New York, United States
Albert Einstein College of Medicine, 111 East 210th St.
The Bronx, New York, United States
Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue
Cincinnati, Ohio, United States
Cleveland Clinic
Cleveland, Ohio, United States
Children's Hospital of Philadelphia, 34th and Civic Center Blvd., 6th Floor Wood Bldg-Neurology
Philadelphia, Pennsylvania, United States
Children's Hospital of Pittsburgh of UPMC
Pittsburgh, Pennsylvania, United States
Vanderbilt University Medical Center
Nashville, Tennessee, United States
University of Texas Health Science Center at Houston
Houston, Texas, United States
University of Virginia Health System
Charlottesville, Virginia, United States
Seattle Children's Hospital
Seattle, Washington, United States
Hospital General Agudos Jose Maria Ramos Mejia
Buenos Aires, , Argentina
University of Melbourne
Melbourne, Victoria, Australia
Countries
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References
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Weisenberg JLZ, Fitzgerald RT, Constantino JN, Winawer MR, Thio LL; EPGP Investigators. Familial aggregation of status epilepticus in generalized and focal epilepsies. Neurology. 2020 Oct 13;95(15):e2140-e2149. doi: 10.1212/WNL.0000000000010708. Epub 2020 Sep 11.
Other Identifiers
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CRC
Identifier Type: -
Identifier Source: secondary_id
1R01NS053998
Identifier Type: OTHER
Identifier Source: secondary_id
1R01NS053998-01A1
Identifier Type: -
Identifier Source: org_study_id
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