ARISEN Network: Understanding and Improving Rare Autoimmune Brain Disorders in Children and Adults
Official title: ARISEN (Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network)
Funded at Emory University · NIH-11417431 · Data updated 2026-11-12
A national, multi-center effort is collecting data on sudden immune-related brain diseases like autoimmune encephalitis, NORSE, and Rasmussen syndrome to learn how these conditions progress and how best to treat them.
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) | $1,517,115 |
| NIH project number | 5U54HD122209-02 |
| Project ID | NIH-11417431 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants include children and adults diagnosed with autoimmune encephalitis, NORSE, Rasmussen syndrome, or related autoimmune brain conditions, who can contribute medical data and experience.
✕Less likely to help
Patients without these specific immune-mediated brain conditions or those unable to participate in registry activities may not directly benefit.
What this research studies
ARISEN is a multi-center patient registry that will track people with sudden immune-related brain disorders from childhood to adulthood. It aims to map how these diseases start, how they affect long-term outcomes, and how treatments work in real life, with an emphasis on patient and caregiver experiences. Researchers will gather medical histories, outcomes, and patient-reported information to identify better therapeutic options and trial readiness. This work builds on collaboration between two major consortia to create a comprehensive picture of these rare conditions. The goal is to speed development of effective therapies and improve quality of life for patients and families.
Why it matters
Potential benefit: If successful, the project could lead to faster, more personalized treatments and better long-term outcomes for people with autoimmune brain disorders.
How similar studies have gone: Previous registries and multi-center efforts have shown that coordinated data collection improves understanding and speeds therapeutic development for rare neurological diseases.
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.