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
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.
The NORSE Consortium Study Newsletter is available here
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.
*Proposed Consensus definitions of NORSE and FIRES available here