ARISEN: Network for immune-related brain inflammation and severe seizures
Official title: ARISEN (Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network)
Funded at Emory University · NIH-11173107 · Data updated 2026-11-12
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 start | September 15, 2025 |
| Project end | August 31, 2030 |
| Funding year | 2025 |
| Award (this year) | $1,630,887 |
| NIH project number | 1U54HD122209-01 |
| Project ID | NIH-11173107 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
People with epilepsy or neurological problems that are not caused by immune-mediated brain inflammation are unlikely to directly benefit from this registry.
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.
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 gone: 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
-
Emory University
Atlanta, United States Active
Researchers
- Principal investigator: Gombolay, Grace Yoonheekim — Emory University
- Study coordinator: Gombolay, Grace Yoonheekim
Related research
Other NIH-funded projects on the same topics.
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Microglia Help Finish Seizures and Heal the Brain
Scientists are studying how brain immune cells (microglia) help end severe seizures and repair brain damage, with potential new ideas for people who have had status epilepticus.
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ARISEN Network pilot funding to advance autoimmune encephalitis and NORSE care
A pilot grants program within the ARISEN network offers small funding to researchers to speed up clinical trials and improve management and treatment of autoimmune encephalitis, Rasmussen syndrome, and NORSE.
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ARISEN Network: Better Diagnosis and Treatment for Autoimmune Brain Inflammation in Children
A large team at Emory is building ways to diagnose autoimmune brain inflammation in kids earlier and tailor treatments to improve outcomes.
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ARISEN Network: Patient-centered outcomes in autoimmune brain inflammation and status epilepticus
A nationwide registry study from Emory will collect patient- and caregiver-reported outcomes to understand how neuroinflammatory brain diseases affect people and what helps them most.
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ARISEN: A regional network to understand autoimmune brain diseases in kids
A national, multi-center effort follows children with autoimmune brain diseases to better understand how their condition progresses and how it affects thinking and everyday life.
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ARISEN: Advancing research on autoimmune brain diseases and neuroinflammation
This grant supports a Career Enhancement Core to train the next generation of clinician-scientists studying autoimmune brain diseases like autoimmune encephalitis, Rasmussen’s syndrome, and NORSE, with a focus on pediatric cases.
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.