Ronny Wickstrom, MD, PhD, Karolinska University Hospital, Sweden, gives more insight to the condition of NORSE and its study in are just released ILAE interview podcast here: https://www.ilae.org/journals/epigraph/sharp-waves-podcast and on Spotify: https://open.spotify.com/episode/47AdihSTc153G6zFjs4r4x?si=BePet7_7TuG92wXgjA1bxw
Collaborative research initiative completed
International consensus recommendations for management of New Onset Refractory Status Epilepticus (NORSE) incl. Febrile Infection-Related Epilepsy Syndrome (FIRES): Statements and Supporting Evidence, by Ronny Wickstrom,Olga Taraschenko,Robertino Dilena,Eric T. Payne,Nicola Specchio,Rima Nabbout,Sookyong Koh,Nicolas Gaspard,Lawrence J. Hirsch, The International NORSE Consensus Group, based upon 48 medical experts was published in Epilepsia, 23 August 2022 https://onlinelibrary.wiley.com/doi/10.1111/epi.17391
NORSE/FIRES Social Media March 2022
We have recently created/revitalized a private Facebook page and a Twitter account with the aims of further raising awareness of NORSE/FIRES and providing a safe space for individuals with NORSE/FIRES and their loved ones to communicate. The Facebook group is moderated and administered by medical professionals and families who have experienced NORSE firsthand. We welcome you to join us!
The NORSE Collaborative Biorepository at Yale has received IRB approval to receive biosamples from anywhere in the world without the donating center needing an IRB. Details on sampling and shipping protocols to follow.
NORSE Collaborative Biorepository
The NORSE/FIRES Family Registry has been translated into French, Spanish, and Mandarin Chinese.
NORSE/FIRES Family Registry - Translation
Annotated Reference List
December 2021
There has been a dramatic increase in NORSE/FIRES publications over the past two years. Below is an Annotated Reference List of over 130 articles on NORSE and/or FIRES organized into categories. Many thanks to Drs. Zubeda Sheikh, Jorge Cespedes, Andreas van Baalen, Nicolas Gaspard, and Lawrence J. Hirsch, for the NORSE Institute. We welcome additions to this list via the Contact page.
3rd NORSE Roundtable Discussion
December 2021
The NORSE Institute held its 3rd NORSE Roundtable Discussion meeting at the American Epilepsy Society Annual Conference on Dec. 4, 2021. The meeting covered introduction of the new open NORSE/FIRES biorepository, project updates, data blitzes, discussion of Dr Ronny Wickstrom's Delphi Consensus study on the evaluation and management of NORSE and FIRES, and next research steps. View a recording of the meeting below.
Refractory Status Epilepticus in Children was the topic of the Pediatric Neuro-critical Care Education series in December 2021. Thanks to the moderator, Dr. James Riviello, a link to the taped discussion of the management of FIRES by an expert panel is below.
Pediatric Neuro-critical Care Education series
December 2021
The NORSE Institute held a scientific symposium for lab scientists and clinical scientists and a NORSE Family Conference for patients, families, clinicians and scientists on March 4-5, 2021 that drew over 160 registrants to the Scientific Symposium and over 100 physicians, patients and families for the Family Conference. Recordings of the Symposium and the Family Conference are available below:
2021 Medical/ Scientific Symposium and NORSE Family Conference
March 2021
