ARISEN aims to improve outcomes for autoimmune brain diseases in children and adults
Official title: ARISEN (Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network)
Funded at Emory University · NIH-11417457 · Data updated 2026-11-12
A network-led effort to better understand and treat autoimmune brain conditions like autoimmune encephalitis, Rasmussen syndrome, and NORSE through a multi-center registry and coordinated care approaches.
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 | 2026 |
| Award (this year) | $742,753 |
| NIH project number | 5U54HD122209-02 |
| Project ID | NIH-11417457 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals diagnosed with autoimmune encephalitis, Rasmussen syndrome, or NORSE, including both pediatric and adult patients who can contribute data or biological samples.
✕Less likely to help
Patients not eligible for data sharing or those without these conditions may not directly benefit.
What this research studies
ARISEN is building a multi-center registry to track how autoimmune brain diseases progress and respond to treatments, with a focus on helping both children and adults. The Administrative Core will organize data sharing, ethics approvals, and collaboration across institutions to speed up clinical trials and identify promising therapies. By linking expertise from CONNECT and NORSE Institute, the project seeks biomarkers and standardized care pathways to improve outcomes for patients with these rare conditions.
Why it matters
Potential benefit: If successful, patients could receive faster, more personalized treatments and clearer guidance on effective care options.
How similar studies have gone: The project builds on successful multi-center registries and prior pediatric anti-NMDARE data collections, showing the value of collaborative data sharing.
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.