NORSE/FIRES Biorepositories

There are now two open, coordinated, and collaborative NORSE/FIRES biorepositories based at Yale (USA) and Paris Pitié-Salpêtrière Hospital (France). They collect samples from adults and children in both the acute and chronic phases of NORSE and FIRES, as well as from control participants.

About the Biorepositories

We handle family consents, cover shipping costs, and share remaining samples and clinical data with qualified investigators worldwide. For patients in the acute phase, cytokine results can be returned in a timely manner, providing potentially critical clinical insights.

Please inform your patients’ families of this opportunity. Many families have found that contributing to these repositories is a meaningful way to help future patients and advance understanding of this otherwise surreal syndrome.

Participating centres may send samples directly to either biorepository without requiring their own Institutional Review Board (IRB) approval, as both Yale and Paris operate under centralised protocols covering sample collection, storage, and distribution.

All results from studies will be made available through a public access data platform, promoting transparency and collaboration across the field.

Sample Collection Protocol

Both repositories use the same sample collection protocol:

Hanin A, Cespedes J, Pulluru Y, Gopaul M, Aronica E, Decampo D, Helbig I, Howe CL, Huttner A, Koh S, Navarro V, Taraschenko O, Vezzani A, Wilson MR, Xian J, Gaspard N, Hirsch LJ. Review and standard operating procedures for collection of biospecimens and analysis of biomarkers in new onset refractory status epilepticus. Epilepsia. 2023 Jun;64(6):1444-1457.

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Key Areas of Study

  • Doctor at a laptop

    Genetic, cytokine, and single-cell RNA sequencing, along with pathology studies, are being conducted at Yale.

  • Doctor holding samples in a lab

    Metagenomic analysis performed in collaboration with Michael Wilson, MD, Mary Karalius, MD and Aaron Bodansky, MD (UCSF) and genetic sequencing performed with Ingo Helbig, MD and Danielle Decampo, MD (CHOP)

Two people working at a wooden table with laptops, papers, and pens, discussing and analyzing handwritten notes and diagrams researching New Onset Refractory Status Epilepticus.

Open Sharing Model

A core value of both repositories is reciprocal sharing. Investigators using biosamples or data must agree to share their findings back with the repositories and to share their analysis findings widely as soon as possible.

Biorepository results are made available to future qualified investigators, creating a growing open-access library of NORSE and FIRES research.

Apply for Bio Samples and/or Clinical Data

Qualified investigators are encouraged to request:

  • An inventory of available samples

  • The biosample request form

  • Additional information on sample use and protocols

Yale NORSE/FIRES Biorepository

Director: Lawrence Hirsch, MD In U.S., collecting samples primarily from within the US and Canada, but also globally. From the acute and chronic phases of NORSE/FIRES. 68 international sites (includes ongoing CCEMRC multi-centre study)

Questions and requests for samples: Email the biorepository team: norse@yale.edu

COLETTE Biorepository Paris Pitié-Salpêtrière Hospital

PIs: Vincent Navarro, MD, PhD & Aurélie Hanin, PharmD, PhD In Europe, collecting samples in Europe and UK, from the acute and chronic phases of NORSE/FIRES

Questions and requests for samples: Email: aurelie.hanin@icm-institute.org or vincent.navarro@aphp.fr

Gerneral Information or Questions

Please contact the NORSE/FIRES biorepository team at Yale: norse@yale.edu

References

Guillemaud M, Chavez M, Kobeissy F, Vezzani A, Jimenez AD, Basha MM, Batra A, Demeret S, Eka O, Eschbach K, Foreman B, Gaspard N, Gerard EE, Gofton TE, Haider HA, Hantus ST, Howe CL, Jongeling A, Kalkach-Aparicio M, Kandula P, Kazazian K, Kim M, Lai YC, Marois C, Mellor A, Mohamed W, Morales M, Pimentel CM, Ramirez AM, Steriade C, Struck AF, Taraschenko O, Torcida Sedano N, Wainwright MS, Yoo JY, Wang KKW, Navarro V, Hirsch LJ, Hanin A. Identification of Distinct Biological Groups of Patients With Cryptogenic NORSE via Inflammatory Profiling. Neurol Neuroimmunol Neuroinflamm. 2025 Jul;12(4):e200403. doi: 10.1212/NXI.0000000000200403. Epub 2025 May 7. PMID: 40334176; PMCID: PMC12063244.

Hanin A, Hirsch LJ. Immune dysregulation in new-onset refractory status epilepticus (NORSE): current insights and therapeutic perspectives. Brain Dev. 2025 Jul 24;47(5):104406. doi: 10.1016/j.braindev.2025.104406. Epub ahead of print. PMID: 40712353.