Updates in SJS/TEN: collaboration, innovation, and community.

Marks, Madeline E, Botta, Ramya Krishna, Abe, Riichiro, Beachkofsky, Thomas M, Boothman, Isabelle, Carleton, Bruce C, Chung, Wen-Hung, Cibotti, Ricardo R, Dodiuk-Gad, Roni P, Grimstein, Christian
et al (show 52 more authors) (2023) Updates in SJS/TEN: collaboration, innovation, and community. Frontiers in medicine, 10. p. 1213889.

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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.

Item Type: Article
Uncontrolled Keywords: HLA genotyping, SCORTEN, Stevens-Johnson Syndrome, Toxic Epidermal Necrolysis, body surface area, electronic medical record, pharmacogenomics, severe adverse cutaneous drug reactions
Divisions: Faculty of Health and Life Sciences
Faculty of Health and Life Sciences > Institute of Systems, Molecular and Integrative Biology
Depositing User: Symplectic Admin
Date Deposited: 02 Feb 2024 11:39
Last Modified: 02 Feb 2024 11:39
DOI: 10.3389/fmed.2023.1213889
Open Access URL: https://doi.org/10.3389/fmed.2023.1213889
Related URLs:
URI: https://livrepository.liverpool.ac.uk/id/eprint/3178363