Kazazian Karnig, Kellogg Marissa, Wong Nora, Eschbach Krista, Moeller Raquel Farias, Gaspard Nicolas, Hirsch Lawrence J, Hocker Sara, Gofton Teneille
Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.
Oregon Health and Science University, Portland, OR, USA.
Epilepsy Curr. 2021 Mar 5:1535759721998329. doi: 10.1177/1535759721998329.
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.
新发难治性癫痫持续状态（NORSE）是难治性癫痫持续状态（RSE）的一种罕见临床表现，发生于无活动性癫痫或既往神经系统疾病的人群。发热感染相关癫痫综合征（FIRES）是NORSE的一个亚类。新发难治性癫痫持续状态/发热感染相关癫痫综合征越来越受到认可；然而，有关疾病病程、临床结局和生存率的信息仍然有限，死亡率和发病率各不相同，但往往很高。NORSE/FIRES家庭登记处的目标是：（1）提供一个易于访问且国际通用的多语言登记处，NORSE/FIRES幸存者、受NORSE/FIRES影响者的代理人或家庭成员或其医生可以在世界上任何有互联网的地方，在一项系统且严格的研究中输入数据；（2）检查受NORSE/FIRES影响者的既往病史、结局和生活质量。
