ARISEN Network: Patient-centered outcomes in autoimmune brain inflammation and status epilepticus
Official title: ARISEN (Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network)
Funded at Emory University · NIH-11417471 · Data updated 2026-11-12
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.
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) | $59,185 |
| NIH project number | 5U54HD122209-02 |
| Project ID | NIH-11417471 on NIH RePORTER |
Who could benefit from this research
✓Could help
Patients with autoimmune encephalitis, NORSE, Rasmussen syndrome, or related neuroinflammatory conditions, and their caregivers, who are willing to provide patient- and caregiver-reported information.
✕Less likely to help
Patients not participating in data collection or those with conditions outside the study's focus may not benefit from these findings.
What this research studies
ARISEN is building a registry of patients with autoimmune encephalitis, NORSE, and Rasmussen syndrome to capture real-world experiences, outcomes, and how treatments impact daily life. The project plans to gather patient and caregiver reports to improve how we measure recovery and quality of life in these conditions. By harmonizing these outcomes with existing data from related trials, doctors can design better clinical trials and care pathways. The work focuses on translating complex brain inflammation into practical insights that guide future treatments and support services.
Why it matters
Potential benefit: If successful, the findings could lead to better patient-centered outcome measures and improved treatment decisions for autoimmune brain inflammation and related epileptic conditions.
How similar studies have gone: Previous trials and registries have shown that patient-reported outcomes can reveal important aspects of recovery not captured by clinical tests, though this specific harmonized approach is a next step.
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: 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.
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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.