ARISEN: A regional network to understand autoimmune brain diseases in kids
Official title: ARISEN (Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network)
Funded at Emory University · NIH-11417467 · Data updated 2026-11-12
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.
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) | $159,618 |
| NIH project number | 5U54HD122209-02 |
| Project ID | NIH-11417467 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children aged 0-11 years with autoimmune encephalitis, Rasmussen syndrome, or NORSE who are receiving standard care and can participate in long-term follow-up.
✕Less likely to help
Children without these conditions or those unable to participate in long-term follow-up would likely not benefit.
What this research studies
This project creates a pediatric-focused, multi-center registry to track children with autoimmune encephalitis, Rasmussen syndrome, and NORSE over time. It will collect clinical and neurocognitive data to map the natural history of these conditions. The study does not test a treatment but aims to improve future trials and care planning by depicting how these diseases unfold in real life. Researchers will partner with families to record symptoms, treatments, and outcomes during routine clinical care. The goal is to enable earlier diagnosis, better brain health outcomes, and more effective therapies in the future.
Why it matters
Potential benefit: If successful, the project could improve how doctors predict illness course and plan treatments, potentially reducing disability for affected children.
How similar studies have gone: Previous efforts are mostly retrospective; ARISEN aims to be the first multi-center prospective registry for these pediatric conditions, representing a novel approach with potential for meaningful impact.
Where this research is happening
-
Emory University
Atlanta, United States Active
Researchers
- Principal investigator: Howarth, Robyn — Emory University
- Study coordinator: Howarth, Robyn
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: 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.
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ARISEN aims to improve outcomes for autoimmune brain diseases in children and adults
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.
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.