Epilepsy Data Ecosystem: A Big-Data Sharing Platform for Better Care
Official title: Pennsieve: Impactful Multimodal Data Sharing for Epilepsy Research
Funded at University of Pennsylvania · NIH-11614319 · Data updated 2026-11-12
A national effort to collect and share large, multi‑modal brain data from people with medication‑resistant epilepsy to speed discoveries and improve treatment options.
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 start | January 18, 2024 |
| Project end | December 31, 2028 |
| Funding year | 2026 |
| Award (this year) | $159,200 |
| NIH project number | 3U24NS134536-03S1 |
| Project ID | NIH-11614319 on NIH RePORTER |
Who could benefit from this research
✓Could help
Patients with medication-resistant epilepsy who have multimodal data (imaging, iEEG, clinical records) and consent to data sharing.
✕Less likely to help
Patients who do not contribute data or who are not part of data-sharing initiatives may not directly benefit.
What this research studies
This project aims to build a scalable Epilepsy Data Ecosystem that brings together multimodal data from patients with epilepsy. It will enhance data sharing and collaboration through an open platform and tools, expanding without compromising privacy and security. By enabling researchers and clinicians to access and explore diverse datasets, it aims to accelerate translational research and ultimately improve clinical care for people living with epilepsy.
Why it matters
Potential benefit: If successful, patients with epilepsy could benefit from faster development of personalized treatments and better understanding of what works for different individuals.
How similar studies have gone: Previous data-sharing efforts like iEEG.org show that collaborative platforms can accelerate research, though this integrates more data types in a novel ecosystem.
Where this research is happening
-
University of Pennsylvania
Philadelphia, United States Active
Researchers
- Principal investigator: Wagenaar, Joost B — University of Pennsylvania
- Study coordinator: Wagenaar, Joost B
Related research
Other NIH-funded projects on the same topics.
-
Scaling Up Task-Shifted Epilepsy Care for Children in Africa
A study to help children with epilepsy in Africa get diagnosed and receive seizure care through trained community health workers.
-
Closed-loop control of interneuron timing to influence seizures and memory in epilepsy
A study tests a brain-quieting system that uses light to precisely time certain brain cells in epilepsy-prone mice to see if this can lessen seizures and improve memory.
-
Exploring epilepsy genes in zebrafish to understand human brain seizures
A study in zebrafish will model human epilepsy genes to help explain how certain brain mutations contribute to seizures.
-
New MRI tools to better plan pediatric epilepsy surgery
A new MRI-based approach helps doctors decide the best time to surgically remove brain tissue in children with difficult-to-control seizures.
-
Sahel Epilepsy Study: finding patterns in epilepsy in rural Africa and its links to genes
A plan to study epilepsy in rural Nigeria to discover how common it is, what factors affect risk, and how genetics may influence it, with results that could improve care for people with epilepsy.
-
Role of ATP1A3 mutations in sudden death related to epilepsy
Aims to understand how ATP1A3 gene changes may lead to sudden death in kids with epilepsy and is exploring new ways to prevent it.
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.