Improving data sharing for epilepsy treatment and research
Official title: Pennsieve: Impactful Multimodal Data Sharing for Epilepsy Research
Funded at University of Pennsylvania · NIH-11012385 · Data updated 2026-11-12
This study is working on a new platform to help people with medication-resistant epilepsy by sharing important health information, so researchers and doctors can work together better and find improved treatment options for you.
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 | 2025 |
| Award (this year) | $690,973 |
| NIH project number | 5U24NS134536-02 |
| Project ID | NIH-11012385 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals with medication-resistant epilepsy who may benefit from advanced treatment options.
✕Less likely to help
Patients whose epilepsy is well-controlled with medication may not receive significant benefits from this research.
What this research studies
This research aims to create a comprehensive data-sharing platform specifically for patients with medication-resistant epilepsy. By integrating various types of data, including advanced imaging and EEG results, the project seeks to enhance collaboration among researchers and clinicians. The goal is to develop a scalable Epilepsy Data Ecosystem that can adapt to the evolving needs of the epilepsy community, ultimately accelerating research and improving clinical care. Patients will benefit from the insights gained through this collaborative approach, which could lead to better treatment options.
Why it matters
Potential benefit: If successful, this research could lead to improved treatment strategies and outcomes for patients with epilepsy.
How similar studies have gone: Previous efforts in data sharing and collaboration within epilepsy research have shown promise, indicating that this approach could be effective.
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.
-
Epilepsy Data Ecosystem: A Big-Data Sharing Platform for Better Care
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.
-
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.
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.