NORSE Diagnostic Checklist
Disclaimer: This is a recommended checklist to investigate NORSE. It does not claim to be a complete list of tests to be done. The NORSE Institute is grateful to its Medical Advisory Board and to Dr Shivani Ghoshal for developing this NORSE checklist. (Last update: 10/31/18.) Constructive comments can be sent via Contact page.
Sample Treatment Algorithm
Disclaimer: This is a sample treatment algorithm for generalized convulsive status epilepticus in adults and children. The NORSE Institute is grateful to Dr Kent Owusu and Yale New Haven Health, Departments of Pharmacy and Neurology for allowing us to post their treatment algorithm. (Last update: 10/31/18.)
A research grant will be funded by the NORSE Institute through the American Epilepsy Society (AES) for a 2020 Early Career or Seed grant.
We are interested in funding: 1) an epidemiological study of NORSE and/or its subtype FIRES preferably using a national or international dataset that provides information about patient demographics, environment and exposure to a potential precipitant incident. OR 2) A non-epidemiological project on NORSE and/or FIRES that features collaboration between clinician(s) and basic scientist(s).
Typical AES restriction that research be conducted in the U.S is waived for this grant because the NORSE Institute is providing full funding. US and international investigators are encouraged to apply.
November 1, 2019: Application submission opens through proposal CENTRAL
January 8, 2020: Full proposals due
May 2020: Award notifications sent out
July 1, 2020: Earliest award start date (may be delayed up to 3 months)
Seed grants deadline March 23, 2020
A prospective, observational study of NORSE patients is being done by participating members of the Critical Care EEG Monitoring Research Consortium (CCEMRC). This study enrolls both adult and pediatric patients. 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 most recent consortium newsletter detailing enrollment criteria and updates is available here.
Congratulations to Eric Payne, MD, MPH and Charles Howe, PhD, both from Mayo Clinic (Rochester, MN) who were $100,000 NORSE Institute grant recipients to study NLRP3 inflammasome dysfunction as a cause for FIRES and NORSE. The NORSE Institute partnered with NORD (National Organization of Rare Disorders) who issued the 2018 request for proposals.
A MAY 2019 Request for Proposals for NORSE research was issued by NORD. This was for two NORSE Institute grants for either clinical or translational research of NORSE and FIRES for up to a combined total of $100,000 U.S. Download RFP. Submissions closed.
A research roadmap for NORSE was published in Neurology, April 2019.
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.
Time to treatment in refractory status epilepticus is vital.
Association of Time to Treatment With Short-term Outcomes for Pediatric Patients With Refractory Convulsive Status Epilepticus. Gaínza-Lein M, Sánchez Fernández I, Loddenkemper T; Pediatric Status Epilepticus Research Group. JAMA Neurol. 2018 Apr 1;75(4):410-418.
The high degree of uncertainty in cause, treatment and outcome, and the extended ICU stay in NORSE necessitates integrated and candid communication among physicians themselves and between physicians and families. The Role of Hope, Compassion, and Uncertainty in Physicians' Reluctance to Initiate Palliative Care. Wong, NW, AMA J Ethics. 2018 Aug 1;20(8):E782-786.
Proposed Consensus definitions of NORSE and its subtype FIRES published in Epilepsia 2018 is here.