par Kazazian, Karnig;Kellogg, Marissa;Wong, Nora;Eschbach, Krista;Moeller, Raquel Farias;Gaspard, Nicolas ;Hirsch, L.J.;Hocker, S.;Gofton, Teneille
Référence Epilepsy currents
Publication Publié, 2021-07-01
Référence Epilepsy currents
Publication Publié, 2021-07-01
Article révisé par les pairs
Résumé : | New-onset refractory status epilepticus (NORSE) is a rare clinical presentation of refractory status epilepticus (RSE) that occurs in people without active epilepsy or preexisting neurologic disorder. Febrile infection-related epilepsy syndrome (FIRES) is a subcategory of NORSE. New-onset refractory status epilepticus/FIRES are becoming increasingly recognized; however, information pertaining to disease course, clinical outcomes, and survivorship remains limited, and mortality and morbidity are variable, but often high. The objective of the NORSE/FIRES Family Registry is to (1) provide an easily accessible and internationally available multilingual registry into which survivors or NORSE/FIRES surrogates or family members of people affected by NORSE/FIRES or their physicians can enter data in a systematic and rigorous research study from anywhere in the world where internet is available; and (2) to examine past medical history, outcomes, and quality of life for people affected by NORSE/FIRES. |