THE NORSE REGISTRY
Since NORSE is rare, there is little, integrated information about the disorder and no established treatment. A registry of NORSE patients has just begun (November 2016.) A patient registry is a collection of information from many patients.
The information that will be collected for the NORSE registry includes demographics, clinical data and biological samples. 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 NORSE registry is being conducted by member centers of the Critical Care EEG Monitoring Research Consortium which is made up of over 40 medical centers in the US, Canada and Brussels. The goals of this registry are to identify possible cause(s) of NORSE, to learn what may influence its outcome, and to determine the best treatments of the disorder.
HOW TO PARTICIPATE
To be included in the registry, the patient must be 5 years old or older, and currently diagnosed with NORSE. If you or a family member would like to participate in this registry, forward this link to your doctor who can contact Nicolas Gaspard, MD, Ph.D the principal investigator of the registry.