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What is the HEP Study?

The Human Epilepsy Project is a group of registry-based studies for people living with epilepsy. The Human Epilepsy Project is jointly supported by the Epilepsy Foundation and the Epilepsy Study Consortium, both nonprofit patient and science advocacy organizations. Scientists, clinicians and families have joined together to collect information about people with epilepsy to help better understand the challenges of living with seizures, to learn how people respond to different treatments and to identify markers (or ways) for improving treatment success. This information is critical to accelerate the development of new treatments, prevention strategies and cures for many types of epilepsy.

What is the HEP2 Study?

The HEP2 Study is a research project to better understand what happens over time in people with focal seizures that don't respond to current treatment.

What do I need to do if I join the study?

  • Keep track of your seizures and medications using My Seizure Diary
  • Answer questions about your medical history and seizures
  • Visit the study team three times over two years for health exams and blood tests.
  • Complete surveys about your quality of life, mood, mental functioning, general health, and healthcare visits or tests.

Participants receive compensation for each study visit.

Who Can Participate?

Participants can join the HEP2 study at one of the recruiting study centers. These study centers were selected because they are epilepsy centers with track records of conducting high-quality research in epilepsy and efficiently recruiting participants into studies. The designated sites for the HEP2 study are located in New York, California, Minnesota, Connecticut, Pennsylvania, and Tennessee. The study will have one international site in Finland. A participant may enroll in the HEP2 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 3 in person visits at the beginning of the study, after the first year, and a final visit after the second year.

If you answer yes to the three questions below, you may be eligible to participate!

  • Have you been diagnosed with focal epilepsy, and have four or more seizures each month?
  • Have you tried four or more seizure medicines but still have seizures?

Contact the HEP team for more information!

Why is HEP Important?

The HEP Study for Focal Epilepsy relies on people with epilepsy to become part of the team - helping doctors and scientists unlock the mysteries of epilepsy.

Participants work with doctors to closely monitor their epilepsy, including careful tracking of their symptoms and medicines using My Seizure Diary. The doctors carefully study each person's epilepsy, and look at blood proteins, DNA, treatments, side effects, and questionnaires about mental function and mood. 

200 people with epilepsy like yours will participate in HEP2. Working together, we will discover clues to help us understand how people will become seizure-free and who will respond to medicines. This knowledge will help people who get epilepsy in the future have more answers instead of questions.

Help us learn more about epilepsy by sharing your experience.

 

 

Are you a researcher with questions about the HEP study? Email Dr. Kathleen Farrell, director of clinical research, at kfarrell@efa.org.