How to use this website:
Professionals: NORSE Institute Medical Advisory board members have posted non-published materials such as suggested treatment workups and curated reading lists to promote awareness and collaboration. We welcome comments and suggestions via the Contact page. Families: Look through both the Medical and the Family sections. Without a medical background, some of the scholarly articles will be hard to understand, but you will get a sense of NORSE and you may want to forward articles or the suggested NORSE workup to your physician. This is an evolving website. If you have suggestions for new topics, please send via the Contact page.
Nora Wong, Executive Director and Editor
Learn and Participate
A prospective, observational study of NORSE patients is being done by member centers 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 that will accept patient information from families, patients and physicians outside of the CCEMRC is under design. Contact: Tenielle Gofton, MD and Nicolas Gaspard, MD, Ph.D via Contact page. Families can see further explanation in the Patients and Families section.
New evidence shows that 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.