How to use this website:
Professionals: The NORSE Institute Medical Advisory board proposed a NORSE diagnostic checklist, treatment workup and curated reading lists on the Medical Professionals page. Families: Look through both the Medical and the Family sections. Without a medical background, some of the terminology may be hard to understand, but you will get a sense of NORSE. You may forward articles or the suggested NORSE workup to your physician. This is an evolving website. Send comments via the Contact page. Thank you.
Nora Wong, Executive Director and Editor

Research and Considerations

A prospective, observational study of NORSE patients is being done by participating members of the Critical Care EEG Monitoring Research Consortium (CCEMRC).  Clinical data and biological samples (serum, CSF, tissue) are being collected. The study includes patients ages 6 and older.  For more information contact: Nicolas Gaspard, MD, Ph.D  and Lawrence Hirsch, MD, via Contact page.  Families can see a further explanation in the Patients and Families section.

A Family Registry of NORSE patients accepting information from families, patients and physicians outside of the CCEMRC is near launch.  Contact: Tenielle Gofton, MD and Nicolas Gaspard, MD, Ph.D via Contact page.  Families can see further explanation in the Patients and Families section.

Time to treatment in refractory status epilepticus is vital. 
Association of Time to Treatment With Short-term Outcomes for Pediatric Patients With Refractory Convulsive Status Epilepticus. Gaínza-Lein M, Sánchez Fernández I, Loddenkemper T; Pediatric Status Epilepticus Research Group. JAMA Neurol. 2018 Apr 1;75(4):410-418.

The high degree of uncertainty in cause, treatment and outcome, and the extended ICU stay in NORSE necessitates integrated and candid communication among physicians themselves and between physicians and families. The Role of Hope, Compassion, and Uncertainty in Physicians' Reluctance to Initiate Palliative Care. Wong, NW, AMA J Ethics. 2018 Aug 1;20(8):E782-786.

There is still no established treatment protocol for NORSE. Government funding is almost impossible to obtain for a newly-termed illness.