NORSE Prospective study
Since NORSE is uncommon, there is little, integrated information about the disorder and no established treatment.
A Prospective, observational study of NORSE patients is being done by member centers of the Critical Care EEG Monitoring Research Consortium. Clinical data and biological samples (serum, CSF, tissue) are being collected. Study includes patients ages 5 and older.
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 best be filled by these highly specialized medical centers. Patient names are deleted, and then all of the patient data is combined and analyzed to see if there are patterns that would identify aspects of the disorder to study further. These patterns cannot be detected when looking at a single patient or even several patients — which is why patient registries that include information from many patients are so important.
The goals of this study are to identify possible cause(s) of NORSE, to determine the best treatments and the range of outcomes.
How to participate
To be included in the registry, the patient must be 5 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 (firstname.lastname@example.org) or Lawrence Hirsch, MD, (email@example.com).
Family Registry of NORSE patients
This study is currently under design. It is an online registry that will accept patient information from families, patients and physicians outside of the CCEMRC. Thee patients may be in either the acute phase of NORSE, have recovered from NORSE, or patients who have died. Contact: Tenielle Gofton, MD (Teneille.Gofton@lhsc.on.ca) and Nicolas Gaspard, MD, PH.D (firstname.lastname@example.org) to be added to list of people to be contacted once registry is open.