Family Registry of Patients with NORSE and FIRES
To get a better picture of what NORSE is, who gets it, and what happens during and after NORSE, Dr Teneille Gofton (Western University, Canada) and other investigators associated with the NORSE Institute have created the NORSE/FIRES Family Registry. The purpose is to obtain enough individual patient data to form a collective picture of NORSE and its sub-category, FIRES. The Registry is an international registry available online. You can read about more about the Family Registry in the professional journal Epilepsy Currents here.
Participating takes time and may bring up memories you may wish you could forget. But your information will help move research forward. We deeply appreciate your time and emotional commitment in participation. Thank you.
- Who is eligible: Patients in the acute phase of NORSE or FIRES, those who have recovered and those who have died. It is important to include every patient who has had NORSE or FIRES. Even if the patient is only suspected to have had NORSE or FIRES, the patient’s data can be entered.
Another way to conceptualize who can enroll in the NORSE/FIRES Family Registry is through the following infographic:
Click the button below to access the consent form and a portal to the NORSE Family Registry. After you sign and submit the consent form, you can gain entry to the NORSE Family Registry itself. Thank you for your time and effort.
The NORSE Family Registry is now available translated into French:
Translated into Spanish:
Translated into Simplified Mandarin Chinese:
Translated into Portugese:
Translated into Hindi
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).
Other investigations in NORSE and FIRES
are detailed in the Research Bulletin below:
