NORSE Prospective Study
A Prospective, observational study of NORSE and FIRES 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 currently includes patients ages 6 and older. It will soon include patients 2 years and older.
This study is different from the NORSE/FIRES Family Registry in that only patients who are in the acute stage of NORSE, hospitalized in one of the participating centers within the Critical Care EEG Monitoring Research Consortium are eligible. The reason for this is that the data requirements for the study can only be filled by these highly specialized medical centers.
The goals of this study are to identify possible cause(s) of NORSE and FIRES, to determine the best treatments and the range of outcomes.
How to participate
To be included in the registry, the patient must be 6 years old or older, and currently hospitalized in one of the participating consortium centers. If you or a family member would like to participate in this study, forward this link to your doctor who can contact: Nicolas Gaspard, MD, PhD (nicolas.gaspard@erasme.ulb.ac.be) or Lawrence Hirsch, MD, (lawrence.hirsch@yale.edu).
