Epilepsy in U.S. Children: How Often and Why
Official title: Epilepsy Incidence Among Children in the United States
Funded at National Opinion Research Center · NIH-11263157 · Data updated 2026-11-12
This grant aims to create and validate up-to-date ways to measure how common epilepsy is among children across the United States, including differences by age, race, geography, and other factors.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | National Opinion Research Center NIH-funded |
| Lab location | 1 site (Chicago, United States) |
| Project start | September 30, 2026 |
| Project end | September 29, 2030 |
| Funding year | 2025 |
| Award (this year) | $443,851 |
| NIH project number | 1U01DP006931-01 |
| Project ID | NIH-11263157 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children in the United States who have or may develop epilepsy and their families are the primary beneficiaries of the improved incidence definitions and data resources.
✕Less likely to help
This project does not involve direct experimental treatment for individual patients.
What this research studies
Researchers will define a modern set of epilepsy categories using international guidelines, then build a large national dataset from pediatric electronic health records and billing data. A clinician-led chart review of over 20,000 children, enhanced by validated language-model assistance, will create a reliable reference standard. The project will map incidence by demographic groups at national, state, and county levels to better understand who is affected and where. The effort will involve collaboration with the CDC and experts to ensure the definitions reflect current clinical practice. The outcome should improve how we track and respond to epilepsy in children across the country.
Why it matters
Potential benefit: If successful, this work could lead to more accurate identification of childhood epilepsy, guiding better prevention, diagnosis, and resource allocation for affected families.
How similar studies have gone: Previous incidence estimates relied on old data; this project builds on newer data and modern definitions to produce more precise results.
Where this research is happening
-
National Opinion Research Center
Chicago, United States Active
Researchers
- Principal investigator: Rein, David B — National Opinion Research Center
- Study coordinator: Rein, David 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.