What is the Human Epilepsy Project?

HEP is an international team of over 300 doctors, researchers, healthcare workers and patients working together at 28 hospitals, to study the biomarkers of new-onset focal epilepsy . Together, we are working toward the day when any patient can come to their doctor and immediately get an appropriate treatment that cures their seizures.

Questions

The doctors of HEP study pictures of the brain and look for molecules and genes to help understand how patients respond to treatments and become seizure-free. As a result of this research future patients with epilepsy will be able to receive an individualized treatment plan, resulting in a more immediate improvement or cure for their condition. Information gathered from the studies may also aid the development of medicines that will prevent epilepsy.

Who can participate?

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The Human Epilepsy Project 3 is looking for patients with diagnosed idiopathic generalized epilepsy who:

  • Have had at least 1 (absence, myoclonic, or generalized tonic-clonic convulsion) seizure in the 6 months prior to treatment

  • Have had AED treatment (for seizures) instituted no more than 12 months prior to enrollment

  • Ages 13 and up

What does participating in HEP involve?

HEP 3:

  • The HEP3 study will follow 380 people with diagnosed idiopathic generalized epilepsy up to two years to measure changes in their seizure frequency, treatments used, adverse events experienced, presence of comorbidities like depression and anxiety, healthcare costs, and quality of life.  

  • Blood samples will be collected to look for biomarkers of epilepsy severity and treatment response, urine will be collected to understand metabolomics, and stool samples will be collected for microbiome studies.

  • Participants can join the HEP3 study at any one of seventeen recruiting study centers: NYU, Maine Medical Center, Georgetown University, Mayo Rochester, Mid-Atlantic Epilepsy Sleep Center, Minnesota Epilepsy Group, Monash University (AUS), Northwell Health, St. Barnabas Medical Center, UCSF, University of Miami, University of Pennsylvania, University of Texas Health Science Center at San Antonio, Washington University in St. Louis, Utah, Mt. Sinai, Johns Hopkins and Yale University.

  • A participant may enroll in the HEP3 study but continue to receive their standard epilepsy care with their current physician, as long as the participant is willing to share his or her medical records, and travel to the study center for up to 3 in-person visits over a period up to 2 years.

HEP Funding

HEP was funded by the Epilepsy Study Consortium, a nonprofit organization comprised of epilepsy doctors, working to improve the care of people with epilepsy by funding and managing research projects.

HEP 2 was funded by the Epilepsy Study Consortium and the Epilepsy Foundation.

HEP 3 is funded by Finding A Cure for Seizures and Epilepsy (FACES), One8 Foundation and Jazz Pharmaceuticals.