Journal article
Updates in SJS/TEN: collaboration, innovation, and community
Frontiers in medicine, Vol.10, 1213889
2023
PMID: 37901413
Abstract
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.
Details
- Title
- Updates in SJS/TEN: collaboration, innovation, and community
- Authors/Creators
- Madeline E. Marks - Vanderbilt University Medical CenterRamya Krishna Botta - Vanderbilt University Medical CenterRiichiro Abe - Niigata UniversityThomas M. Beachkofsky - Uniformed Services University of the Health SciencesIsabelle BoothmanBruce C. Carleton - University of British ColumbiaWen-Hung ChungRicardo R. Cibotti - National Institutes of HealthRoni P. Dodiuk-Gad - University of TorontoChristian Grimstein - United States Food and Drug AdministrationAkito Hasegawa - Niigata UniversityJay H. Hoofnagle - National Institutes of HealthShuen-Iu HungBenjamin Kaffenberger - The Ohio State University Wexner Medical CenterDaniela Kroshinsky - Brigham and Women's HospitalRannakoe J. Lehloenya - University of Cape TownMichelle Martin-Pozo - Vanderbilt University Medical CenterRobert G. Micheletti - University of PennsylvaniaMaja Mockenhaupt - University of FreiburgKeisuke Nagao - National Institutes of HealthSuman Pakala - Vanderbilt University Medical CenterAmy Palubinsky - Vanderbilt University Medical CenterHelena B. Pasieka - MedStar Washington Hospital CenterJonathan PeterMunir Pirmohamed - University of LiverpoolMelissa Reyes - United States Food and Drug AdministrationHajirah N. Saeed - Massachusetts Eye and Ear InfirmaryJeffery Shupp - MedStar Washington Hospital CenterChonlaphat Sukasem - Mahidol UniversityJhih Yu Syu - National Cheng Kung UniversityMayumi Ueta - Kyoto Prefectural University of MedicineLi Zhou - Brigham and Women's HospitalWan-Chun ChangPatrice Becker - National Institute of Allergy and Infectious DiseasesTeresa Bellon - Hospital La Paz Institute for Health ResearchKemberlee Bonnet - Vanderbilt UniversityGianpiero CavalleriJames Chodosh - University of New MexicoAnna K. Dewan - Vanderbilt University Medical CenterArturo Dominguez - Southwestern Medical CenterXinzhong Dong - Johns Hopkins UniversityElena Ezhkova - Icahn School of Medicine at Mount SinaiEsther Fuchs - University of WashingtonJennifer Goldman - Children's Mercy HospitalSonia Himed - University of Cincinnati Medical CenterSimon Mallal - Vanderbilt University Medical CenterAlina Markova - Memorial Sloan Kettering Cancer CenterKerry McCawley - Rome FoundationAllison E. Norton - Vanderbilt University Medical CenterDavid Ostrov - University of FloridaMichael Phan - United States Food and Drug AdministrationArthur Sanford - Loyola University Medical CenterDavid Schlundt - Vanderbilt UniversityDaniel Schneider - MedStar Washington Hospital CenterNeil Shear - Emek Medical CenterKanade Shinkai - University of California, San FranciscoEric Tkaczyk - Vanderbilt UniversityJason A. Trubiano - Austin HealthSimona Volpi - National Institutes of HealthCharles S. Bouchard - Loyola University Medical CenterSherrie J. Divito - Brigham and Women's HospitalElizabeth J. Phillips - Vanderbilt University Medical Center
- Publication Details
- Frontiers in medicine, Vol.10, 1213889
- Publisher
- Frontiers Media S.A
- Identifiers
- 991005884847007891
- 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.
- Murdoch Affiliation
- Research and Innovation Office; Institute for Immunology and Infectious Diseases
- Language
- English
- Resource Type
- Journal article
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