The Human Epilepsy Project

NCT ID: NCT02126774

Last Updated: 2021-07-06

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

COMPLETED

Total Enrollment

488 participants

Study Classification

OBSERVATIONAL

Study Start Date

2012-07-31

Study Completion Date

2021-07-01

Brief Summary

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HEP is a five-year, prospective, observational study whose primary goal is to identify clinical characteristics and biomarkers predictive of disease outcome, progression, and treatment response in participants with newly treated focal epilepsy.

Detailed Description

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Epilepsy is a serious disease. It affects approximately 2.4 million Americans, with a lifetime risk estimated at 3%. More than 181,000 Americans develop epilepsy every year, and a substantial proportion has seizures that cannot be controlled by available medications. For the vast majority of patients with epilepsy, we do not understand the biological basis of their disease; we do not know whether a given anti-epileptic drug (AED) will be effective; and we cannot predict the severity of the seizure disorder, the potential emergence of co-morbidities, or the likelihood of remission.

The Human Epilepsy Project seeks to answer these unknowns by collecting high-resolution clinical information and treatment response, MRIs, EEGs, and blood and urine samples for biomarkers. A major outcome of the project is to create an open data repository of clinical information and biologic samples for future studies.

HEP may have a transformative impact on epilepsy diagnosis and treatment by identifying critical clinical features and biomarkers at the onset of epilepsy that can be used to predict outcome and guide therapy. We hope to identify subsets of patients at high risk for pharmacoresistance who may benefit from more aggressive initial therapy and earlier consideration for surgical treatment. The existence of biomarkers that predict the likelihood of disease remission would dramatically affect treatment decisions and counseling for millions of patients.

In addition to its impact on current clinical care, the data and specimens collected in HEP, including sequential neuroimaging, electrophysiology and metabolite profiles, and banked DNA for the purpose of future genomics studies, have the potential to provide new insights into the biological basis of focal epilepsy, which will advance our efforts to discover effective treatments and cures for this disorder.

Conditions

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Focal Epilepsy

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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focal epilepsy

observational study

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Clinical seizure(s) and history consistent with focal epilepsy
* At least two confirmed spontaneous seizures, at least 24 hours apart, in the 12 months prior to enrollment
* Complete AED history prior to enrollment (with approximate dates and doses) is available (exception can be made for AEDs taken for \<1 week)
* Age ≥12 years and ≤60 years at time of seizure onset
* Age ≥12 years and ≤60 years at time of enrollment
* Treatment instituted not more than 4 months prior to enrollment
* One of the following:

1. Normal MRI with inter-ictal EEG showing focal abnormality (focal sharp waves or focal slowing)
2. Normal MRI and normal inter-ictal EEG, with clinical or electrographic seizure activity on ictal EEG
3. Definitive clinical history of recurrent seizures consistent with focal epilepsy, adjudicated by central reviewers, if normal MRI and normal EEG
4. Focal lesion (non-progressive) on MRI with normal EEG (acceptable focal lesions include MTS, FCD, single cavernoma, and AVMs that are not of large size and lack significant amounts of hemosiderin)

Exclusion Criteria

* Idiopathic or symptomatic generalized epilepsy
* Any epilepsy etiology that could produce significant gliosis or brain injury and would be likely to alter biomarkers. These include:

1. Epilepsy with an etiology occurring in the previous two years that would produce significant CNS injury (e.g., traumatic brain injury that involves direct disruption of brain tissue, stroke, encephalitis)
2. History of intracranial bleeding (e.g., subarachnoid, intraparenchymal)
* Identified genetic epilepsy syndrome
* Presence of moderate or greater developmental or cognitive delay prior to seizure onset (e.g., if an adolescent, not in self-contained classroom; if IQ is documented, should be \> 70)
* History of chronic drug or alcohol abuse within the last 2 years
* IGE/focal epilepsy mixed syndromes
* Progressive neurological disorder (brain tumor, AD, PME, etc.)
* Major medical co-morbidities such as renal failure requiring dialysis, metastatic cancer, HIV, or significant liver or renal disease
* Autism Spectrum Disorder
* Seizures only during pregnancy
* History of previous or current significant psychiatric disorder that would interfere with conduct of the study
Minimum Eligible Age

12 Years

Maximum Eligible Age

60 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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The Epilepsy Study Consortium

OTHER

Sponsor Role collaborator

NYU Langone Health

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Ruben Kuzniecky, MD

Role: PRINCIPAL_INVESTIGATOR

New York University, Comprehensive Epilepsy Center

Jacqueline French, MD

Role: PRINCIPAL_INVESTIGATOR

New York University, Comprehensive Epilepsy Center

Daniel Lowenstein, MD

Role: PRINCIPAL_INVESTIGATOR

University of California, San Francisco, Department of Neurology

Locations

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University of Alabama

Birmingham, Alabama, United States

Site Status

University of California San Francisco

San Francisco, California, United States

Site Status

Children's Hospital Colorado

Denver, Colorado, United States

Site Status

Yale University

New Haven, Connecticut, United States

Site Status

University of Miami

Miami, Florida, United States

Site Status

Emory University

Atlanta, Georgia, United States

Site Status

Johns Hopkins School of Medicine

Baltimore, Maryland, United States

Site Status

University of Maryland Medical Center

Baltimore, Maryland, United States

Site Status

Mid-Atlantic Epilepsy and Sleep Center

Bethesda, Maryland, United States

Site Status

Beth Israel Deaconess Medical Center

Boston, Massachusetts, United States

Site Status

Massachusetts General Hospital

Boston, Massachusetts, United States

Site Status

University of Michigan

Ann Arbor, Michigan, United States

Site Status

Mayo Clinic

Rochester, Minnesota, United States

Site Status

Minnesota Epilepsy Group

Saint Paul, Minnesota, United States

Site Status

Washington University

St Louis, Missouri, United States

Site Status

University of Nebraska Medical Center

Omaha, Nebraska, United States

Site Status

Saint Barnabas Medical Center

Livingston, New Jersey, United States

Site Status

North Shore-LIJ Health System

Great Neck, New York, United States

Site Status

Albert Einstein College of Medicine

New York, New York, United States

Site Status

Columbia University Medical Center

New York, New York, United States

Site Status

New York University Langone Medical Center

New York, New York, United States

Site Status

Geisinger Medical Center

Danville, Pennsylvania, United States

Site Status

Thomas Jefferson University

Philadelphia, Pennsylvania, United States

Site Status

Medical University of South Carolina

Charleston, South Carolina, United States

Site Status

Vanderbilt University

Nashville, Tennessee, United States

Site Status

University of Texas

Houston, Texas, United States

Site Status

Austin Hospital, University of Melbourne

Melbourne, , Australia

Site Status

Royal Melbourne Hospital

Melbourne, , Australia

Site Status

Prince of Wales Hospital, University of New South Wales

Sydney, , Australia

Site Status

University of Western Ontario

London, Ontario, Canada

Site Status

Countries

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United States Australia Canada

References

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Barnard SN, Chen Z, Holmes M, Kanner AM, Hegde M, Kuzniecky R, Lowenstein D, French JA; Human Epilepsy Project (1) Investigators. Treatment Response to Antiseizure Medications in People With Newly Diagnosed Focal Epilepsy. JAMA Neurol. 2025 Aug 25:e252949. doi: 10.1001/jamaneurol.2025.2949. Online ahead of print.

Reference Type DERIVED
PMID: 40853673 (View on PubMed)

Related Links

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Other Identifiers

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12-02865

Identifier Type: -

Identifier Source: org_study_id

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