TY - JOUR
T1 - Updates in SJS/TEN
T2 - collaboration, innovation, and community
AU - Marks, Madeline E.
AU - Botta, Ramya Krishna
AU - Abe, Riichiro
AU - Beachkofsky, Thomas M.
AU - Boothman, Isabelle
AU - Carleton, Bruce C.
AU - Chung, Wen Hung
AU - Cibotti, Ricardo R.
AU - Dodiuk-Gad, Roni P.
AU - Grimstein, Christian
AU - Hasegawa, Akito
AU - Hoofnagle, Jay H.
AU - Hung, Shuen Iu
AU - Kaffenberger, Benjamin
AU - Kroshinsky, Daniela
AU - Lehloenya, Rannakoe J.
AU - Martin-Pozo, Michelle
AU - Micheletti, Robert G.
AU - Mockenhaupt, Maja
AU - Nagao, Keisuke
AU - Pakala, Suman
AU - Palubinsky, Amy
AU - Pasieka, Helena B.
AU - Peter, Jonathan
AU - Pirmohamed, Munir
AU - Reyes, Melissa
AU - Saeed, Hajirah N.
AU - Shupp, Jeffery
AU - Sukasem, Chonlaphat
AU - Syu, Jhih Yu
AU - Ueta, Mayumi
AU - Zhou, Li
AU - Chang, Wan Chun
AU - Becker, Patrice
AU - Bellon, Teresa
AU - Bonnet, Kemberlee
AU - Cavalleri, Gianpiero
AU - Chodosh, James
AU - Dewan, Anna K.
AU - Dominguez, Arturo
AU - Dong, Xinzhong
AU - Ezhkova, Elena
AU - Fuchs, Esther
AU - Goldman, Jennifer
AU - Himed, Sonia
AU - Mallal, Simon
AU - Markova, Alina
AU - McCawley, Kerry
AU - Norton, Allison E.
AU - Ostrov, David
AU - Phan, Michael
AU - Sanford, Arthur
AU - Schlundt, David
AU - Schneider, Daniel
AU - Shear, Neil
AU - Shinkai, Kanade
AU - Tkaczyk, Eric
AU - Trubiano, Jason A.
AU - Volpi, Simona
AU - Bouchard, Charles S.
AU - Divito, Sherrie J.
AU - Phillips, Elizabeth J.
N1 - Publisher Copyright:
Copyright © 2023 Marks, Botta, Abe, Beachkofsky, Boothman, Carleton, Chung, Cibotti, Dodiuk-Gad, Grimstein, Hasegawa, Hoofnagle, Hung, Kaffenberger, Kroshinsky, Lehloenya, Martin-Pozo, Micheletti, Mockenhaupt, Nagao, Pakala, Palubinsky, Pasieka, Peter, Pirmohamed, Reyes, Saeed, Shupp, Sukasem, Syu, Ueta, Zhou, Chang, Becker, Bellon, Bonnet, Cavalleri, Chodosh, Dewan, Dominguez, Dong, Ezhkova, Fuchs, Goldman, Himed, Mallal, Markova, McCawley, Norton, Ostrov, Phan, Sanford, Schlundt, Schneider, Shear, Shinkai, Tkaczyk, Trubiano, Volpi, Bouchard, Divito and Phillips.
PY - 2023
Y1 - 2023
N2 - Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a predominantly drug-induced disease, with a mortality rate of 15–20%, that engages the expertise of multiple disciplines: dermatology, allergy, immunology, clinical pharmacology, burn surgery, ophthalmology, urogynecology, and psychiatry. SJS/TEN has an incidence of 1–5/million persons per year in the United States, with even higher rates globally. One of the challenges of SJS/TEN has been developing the research infrastructure and coordination to answer questions capable of transforming clinical care and leading to improved patient outcomes. SJS/TEN 2021, the third research meeting of its kind, was held as a virtual meeting on August 28–29, 2021. The meeting brought together 428 international scientists, in addition to a community of 140 SJS/TEN survivors and family members. The goal of the meeting was to brainstorm strategies to support the continued growth of an international SJS/TEN research network, bridging science and the community. The community workshop section of the meeting focused on eight primary themes: mental health, eye care, SJS/TEN in children, non-drug induced SJS/TEN, long-term health complications, new advances in mechanisms and basic science, managing long-term scarring, considerations for skin of color, and COVID-19 vaccines. The meeting featured several important updates and identified areas of unmet research and clinical need that will be highlighted in this white paper.
AB - Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a predominantly drug-induced disease, with a mortality rate of 15–20%, that engages the expertise of multiple disciplines: dermatology, allergy, immunology, clinical pharmacology, burn surgery, ophthalmology, urogynecology, and psychiatry. SJS/TEN has an incidence of 1–5/million persons per year in the United States, with even higher rates globally. One of the challenges of SJS/TEN has been developing the research infrastructure and coordination to answer questions capable of transforming clinical care and leading to improved patient outcomes. SJS/TEN 2021, the third research meeting of its kind, was held as a virtual meeting on August 28–29, 2021. The meeting brought together 428 international scientists, in addition to a community of 140 SJS/TEN survivors and family members. The goal of the meeting was to brainstorm strategies to support the continued growth of an international SJS/TEN research network, bridging science and the community. The community workshop section of the meeting focused on eight primary themes: mental health, eye care, SJS/TEN in children, non-drug induced SJS/TEN, long-term health complications, new advances in mechanisms and basic science, managing long-term scarring, considerations for skin of color, and COVID-19 vaccines. The meeting featured several important updates and identified areas of unmet research and clinical need that will be highlighted in this white paper.
KW - HLA genotyping
KW - SCORTEN
KW - Stevens-Johnson Syndrome
KW - Toxic Epidermal Necrolysis
KW - body surface area
KW - electronic medical record
KW - pharmacogenomics
KW - severe adverse cutaneous drug reactions
UR - http://www.scopus.com/inward/record.url?scp=85175048676&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85175048676&partnerID=8YFLogxK
U2 - 10.3389/fmed.2023.1213889
DO - 10.3389/fmed.2023.1213889
M3 - Review article
C2 - 37901413
AN - SCOPUS:85175048676
SN - 2296-858X
VL - 10
JO - Frontiers in Medicine
JF - Frontiers in Medicine
M1 - 1213889
ER -