ARISEN: Network for immune-related brain inflammation and severe seizures
ARISEN (Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network)
This project is building a national network and registry to gather health information from children and adults with immune-related brain inflammation and severe seizure conditions to help speed diagnosis and improve care.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Emory University NIH-funded |
| Lab location | 1 site (Atlanta, United States) |
| Project ID | NIH-11173107 on NIH RePORTER |
What this research studies
If I join, doctors would collect my medical history, test results, and information about my symptoms and treatments over time. They may also ask for blood or other samples to bank for research and for caregiver- or patient-reported outcome surveys. The network links multiple U.S. medical centers so researchers can combine data from many patients with rare conditions like autoimmune encephalitis, NORSE, and Rasmussen syndrome. The goal is to learn how these diseases progress, find markers that help with earlier diagnosis, and make it possible to run better clinical trials in the future.
Who could benefit from this research
Good fit: Ideal candidates are children and adults diagnosed with autoimmune encephalitis, new-onset refractory status epilepticus (NORSE), Rasmussen syndrome, or related immune-mediated brain inflammation, and their caregivers for outcomes data.
Not a fit: People with epilepsy or neurological problems that are not caused by immune-mediated brain inflammation are unlikely to directly benefit from this registry.
Why it matters
Potential benefit: This work could lead to faster diagnosis, better-targeted treatments, and more clinical trials for people with rare immune-related brain disorders.
How similar studies have performed: This is among the first U.S. multi-center registries focused on these rare disorders; smaller cohorts have given useful clues but a coordinated national network is relatively new.
Where this research is happening
Atlanta, United States
- Emory University — Atlanta, United States (Active)
Researchers
- Principal investigator: Gombolay, Grace Yoonheekim — Emory University
- Study coordinator: Gombolay, Grace Yoonheekim
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.