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

Journal: Frontiers in medicine

Volume: 10

Issue: 

Year of Publication: 

Affiliated Institutions:  Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States. Division of Dermatology, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan. Departments of Dermatology and Medicine, Uniformed Services University, Bethesda, MD, United States. The SFI Centre for Research Training in Genomics Data Science, Dublin, Ireland. Division of Translational Therapeutics, Department of Pediatrics, Faculty of Medicine, University of British Columbia and the British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada. Department of Dermatology, Drug Hypersensitivity Clinical and Research Center, Chang Gung Memorial Hospital, Taoyuan, Taiwan. National Institute of Arthritis and Musculoskeletal and Skin (NIAMS), National Institutes of Health (NIH), Bethesda, MD, United States. Department of Dermatology, Emek Medical Center, Afula, Israel. Office of Clinical Pharmacology, Office of Translational Sciences, Center for Drug Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, MD, United States. Liver Disease Research Branch, Division of Digestive Diseases and Nutrition of NIDDK, National Institutes of Health (NIH), Bethesda, MD, United States. Cancer Vaccine and Immune Cell Therapy Core Laboratory, Department of Medical Research, Chang Gung Memorial Hospital, Taoyuan, Taiwan. Department of Dermatology, Ohio State University Wexner Medical Center, Columbus, OH, United States. Department of Dermatology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, United States. Division of Dermatology, Department of Medicine, University of Cape Town, Cape Town, South Africa. Dokumentationszentrum schwerer Hautreaktionen (dZh), Department of Dermatology, Medical Center and Medical Faculty, University of Freiburg, Freiburg, Germany. Division of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa. Department of Pharmacology and Therapeutics, University of Liverpool, Liverpool, United Kingdom. Center for Drug Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States. Massachusetts Eye and Ear, Harvard Medical School, Boston, MA, United States. Department of Surgery, Plastic and Reconstructive Surgery, Biochemistry, and Molecular and Cellular Biology, MedStar Washington Hospital Center, Georgetown University School of Medicine, Washington, D.C., DC, United States. Department of Pathology, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Bangkok, Thailand. Department of Cell Biology and Anatomy, College of Medicine, National Cheng Kung University, Tainan, Taiwan. Department of Frontier Medical Science and Technology for Ophthalmology, Kyoto Prefectural University of Medicine, Kyoto, Japan. Division of General Internal Medicine and Primary Care, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, United States. Division of Allergy, Immunology, and Transplantation, National Institute of Allergy and Infectious Disease, Bethesda, MD, United States. Drug Hypersensitivity Laboratory, La Paz Health Research Institute (IdiPAZ), Madrid, Spain. Department of Psychology, Vanderbilt University, Nashville, TN, United States. University of New Mexico School of Medicine, Albuquerque, NM, United States. Department of Dermatology, Vanderbilt University Medical Center, Nashville, TN, United States. Department of Dermatology and Internal Medicine, UT Southwestern Medical Center, Dallas, TX, United States. Department of Neuroscience, Johns Hopkins University School of Medicine, Baltimore, MD, United States. Department of Cell, Developmental, and Regenerative Biology and Dermatology, Black Family Stem Cell Institute, Mount Sinai School of Medicine, New York, NY, United States. Department of Obstetrics and Gynecology, University of Washington, Seattle, WA, United States. Division of Pediatric Infectious Diseases and Clinical Pharmacology, Children's Mercy, Kansas City, MO, United States. College of Medicine, University of Cincinnati, Cincinnati, OH, United States. Division of Infectious Diseases, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States. Department of Dermatology, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, NY, United States. Stevens-Johnson Syndrome Foundation, Westminster, CO, United States. Division of Pediatric Allergy, Immunology, and Pulmonary Medicine, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, United States. Department of Pathology, Immunology and Laboratory Medicine, University of Florida, Gainesville, FL, United States. Division of Pharmacovigilance-I, Center for Drug Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, MD, United States. Division of Trauma, Surgical Critical Care, and Burns, Loyola University Medical Center, Chicago, IL, United States. Department of Psychiatry and Surgery, MedStar Washington Hospital Center, Georgetown University School of Medicine, Washington, D.C., DC, United States. Department of Dermatology, University of California, San Francisco, San Francisco, CA, United States. Department of Veterans Affairs, Vanderbilt Dermatology Translational Research Clinic (VDTRC.org), Nashville, TN, United States. Department of Infectious Diseases and Medicine, Austin Health, University of Melbourne, Melbourne, VIC, Australia. National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, MD, United States. Department of Opthalmology, Loyola University Medical Center, Chicago, IL, United States.

Abstract summary 

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.

Authors & Co-authors:  Marks Madeline E ME Botta Ramya Krishna RK Abe Riichiro R Beachkofsky Thomas M TM Boothman Isabelle I Carleton Bruce C BC Chung Wen-Hung WH Cibotti Ricardo R RR Dodiuk-Gad Roni P RP Grimstein Christian C Hasegawa Akito A Hoofnagle Jay H JH Hung Shuen-Iu SI Kaffenberger Benjamin B Kroshinsky Daniela D Lehloenya Rannakoe J RJ Martin-Pozo Michelle M Micheletti Robert G RG Mockenhaupt Maja M Nagao Keisuke K Pakala Suman S Palubinsky Amy A Pasieka Helena B HB Peter Jonathan J Pirmohamed Munir M Reyes Melissa M Saeed Hajirah N HN Shupp Jeffery J Sukasem Chonlaphat C Syu Jhih Yu JY Ueta Mayumi M Zhou Li L Chang Wan-Chun WC Becker Patrice P Bellon Teresa T Bonnet Kemberlee K Cavalleri Gianpiero G Chodosh James J Dewan Anna K AK Dominguez Arturo A Dong Xinzhong X Ezhkova Elena E Fuchs Esther E Goldman Jennifer J Himed Sonia S Mallal Simon S Markova Alina A McCawley Kerry K Norton Allison E AE Ostrov David D Phan Michael M Sanford Arthur A Schlundt David D Schneider Daniel D Shear Neil N Shinkai Kanade K Tkaczyk Eric E Trubiano Jason A JA Volpi Simona S Bouchard Charles S CS Divito Sherrie J SJ Phillips Elizabeth J EJ

Study Outcome 

Source Link: Visit source

Statistics
Citations :  Peter JG, Lehloenya R, Dlamini S, Risma K, White KD, Konvinse KC, et al. . Severe delayed cutaneous and systemic reactions to drugs: a global perspective on the science and art of current practice. J Allergy Clin Immunol Pract. (2017) 5:547–63. doi: 10.1016/j.jaip.2017.01.025, PMID:
Authors :  62
Identifiers
Doi : 1213889
SSN : 2296-858X
Study Population
Male,Female
Mesh Terms
Other Terms
HLA genotyping;SCORTEN;Stevens-Johnson Syndrome;Toxic Epidermal Necrolysis;body surface area;electronic medical record;pharmacogenomics;severe adverse cutaneous drug reactions
Study Design
Cross Sectional Study
Study Approach
Country of Study
Publication Country
Switzerland