A platform to share and combine epilepsy medical data
Pennsieve: Impactful Multimodal Data Sharing for Epilepsy Research
Building a shared online system to collect and link brain recordings, scans, device data, and clinical records to help people with epilepsy, especially those whose seizures are not controlled by medication.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Pennsylvania NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project ID | NIH-11261103 on NIH RePORTER |
What this research studies
This project is creating an Epilepsy Data Ecosystem to bring together many kinds of patient data—like intracranial EEG, imaging, device logs, and clinical notes—into one accessible platform. The team will expand and sustain an open data platform so hospitals and researchers can upload, organize, and explore large, multimodal datasets. Tools and standards will be developed to protect privacy while making data usable for machine learning and neuroscience studies. The aim is to make it easier for researchers to discover patterns that could lead to better treatments and device improvements.
Who could benefit from this research
Good fit: Ideal contributors are people with epilepsy—especially those with medication-resistant seizures—who can allow their clinical records, brain recordings, imaging, or device data to be shared for research.
Not a fit: People without epilepsy or those who cannot or will not share their medical data are unlikely to gain direct benefit from participating in this project.
Why it matters
Potential benefit: If successful, this could speed up discoveries that lead to better treatments, diagnostics, and device improvements for people with epilepsy.
How similar studies have performed: Prior open-data efforts such as iEEG.org and other epilepsy data-sharing projects have shown promise, but this larger, integrated platform builds on and expands those efforts.
Where this research is happening
Philadelphia, United States
- University of Pennsylvania — Philadelphia, United States (Active)
Researchers
- Principal investigator: Wagenaar, Joost B — University of Pennsylvania
- Study coordinator: Wagenaar, Joost B
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.