Human Epilepsy Project
Alternate Titles(s): HEP, HEP2, HEP3
- Description
The Human Epilepsy Project (HEP) is a multi-institutional series of prospective, observational studies to identify factors that predict disease outcome, progression, and treatment response among participants with epilepsy.
- HEP, conducted between 2012 and 2020, included 488 participants aged 12 to 60 years old with new onset focal epilepsy recruited in Australia, Canada, and the United States. Participants were followed for 5 years and contributed clinical measures, blood samples, magnetic resonance imaging (MRI) data, electroencephalograms (EEG), and seizure diary data.
- HEP2, which completed recruitment, includes 205 participants aged 16 to 65 years old with medication-resistant focal epilepsy in the United States. The study assesses changes in health status, treatments, quality of life, and health care costs. Blood samples are collected at designated points throughout the course of follow-up (target duration of 2 years).
- HEP3 is an ongoing study to identify predictive factors for different treatment responses to seizure medications. Eligible participants are at least 13 years old with newly diagnosed idiopathic generalized epilepsy. Participants will contribute biomarkers over the course of a 2-year follow-up period.
- Timeframe
- 2012 - Present
- Geographic Coverage
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AustraliaCanadaUnited States
Access
- Restrictions
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Application RequiredAuthor Approval Required
- Instructions
Data from HEP and HEP2 may be shared through scientific collaboration. Biospecimens from the HEP2 study are available to approved researchers upon request and HEP2 PI review. Considerations for collaboration and specimen sharing include strong scientific justification for the proposed project, attestation that patient confidentiality will be upheld, agreement to data use terms, and the collaborator's track record.
Please complete the Data Request Form to request access to this dataset. The information included in the form will be sent to the study team, who will evaluate your request for their data. The investigators may ask you to provide additional information if necessary.
- Other Resources
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NCT02126774
HEP on ClinicalTrials.gov
NCT03531008HEP2 on ClinicalTrials.gov
NCT05374928HEP3 on ClinicalTrials.gov