Frontiers in Medicine (Oct 2023)
Updates in SJS/TEN: collaboration, innovation, and community
- Madeline E. Marks,
- Ramya Krishna Botta,
- Riichiro Abe,
- Thomas M. Beachkofsky,
- Isabelle Boothman,
- Bruce C. Carleton,
- Wen-Hung Chung,
- Ricardo R. Cibotti,
- Roni P. Dodiuk-Gad,
- Roni P. Dodiuk-Gad,
- Roni P. Dodiuk-Gad,
- Christian Grimstein,
- Akito Hasegawa,
- Jay H. Hoofnagle,
- Shuen-Iu Hung,
- Benjamin Kaffenberger,
- Daniela Kroshinsky,
- Rannakoe J. Lehloenya,
- Michelle Martin-Pozo,
- Robert G. Micheletti,
- Maja Mockenhaupt,
- Keisuke Nagao,
- Suman Pakala,
- Amy Palubinsky,
- Helena B. Pasieka,
- Helena B. Pasieka,
- Helena B. Pasieka,
- Jonathan Peter,
- Munir Pirmohamed,
- Melissa Reyes,
- Hajirah N. Saeed,
- Jeffery Shupp,
- Chonlaphat Sukasem,
- Jhih Yu Syu,
- Mayumi Ueta,
- Li Zhou,
- Wan-Chun Chang,
- Patrice Becker,
- Teresa Bellon,
- Kemberlee Bonnet,
- Gianpiero Cavalleri,
- James Chodosh,
- Anna K. Dewan,
- Arturo Dominguez,
- Xinzhong Dong,
- Elena Ezhkova,
- Esther Fuchs,
- Jennifer Goldman,
- Sonia Himed,
- Simon Mallal,
- Alina Markova,
- Kerry McCawley,
- Allison E. Norton,
- David Ostrov,
- Michael Phan,
- Arthur Sanford,
- David Schlundt,
- Daniel Schneider,
- Neil Shear,
- Kanade Shinkai,
- Eric Tkaczyk,
- Jason A. Trubiano,
- Simona Volpi,
- Charles S. Bouchard,
- Sherrie J. Divito,
- Elizabeth J. Phillips
Affiliations
- Madeline E. Marks
- Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States
- Ramya Krishna Botta
- Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States
- Riichiro Abe
- Division of Dermatology, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan
- Thomas M. Beachkofsky
- Departments of Dermatology and Medicine, Uniformed Services University, Bethesda, MD, United States
- Isabelle Boothman
- The SFI Centre for Research Training in Genomics Data Science, Dublin, Ireland
- Bruce C. Carleton
- 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
- Wen-Hung Chung
- Department of Dermatology, Drug Hypersensitivity Clinical and Research Center, Chang Gung Memorial Hospital, Taoyuan, Taiwan
- Ricardo R. Cibotti
- National Institute of Arthritis and Musculoskeletal and Skin (NIAMS), National Institutes of Health (NIH), Bethesda, MD, United States
- Roni P. Dodiuk-Gad
- Department of Dermatology, Emek Medical Center, Afula, Israel
- Roni P. Dodiuk-Gad
- Division of Dermatology, Department of Medicine, University of Toronto, Toronto, ON, Canada
- Roni P. Dodiuk-Gad
- 0Department of Dermatology, Bruce Rappaport Faculty of Medicine, Technion Institute of Technology, Haifa, Israel
- Christian Grimstein
- 1Office of Clinical Pharmacology, Office of Translational Sciences, Center for Drug Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, MD, United States
- Akito Hasegawa
- Division of Dermatology, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan
- Jay H. Hoofnagle
- 2Liver Disease Research Branch, Division of Digestive Diseases and Nutrition of NIDDK, National Institutes of Health (NIH), Bethesda, MD, United States
- Shuen-Iu Hung
- 3Cancer Vaccine and Immune Cell Therapy Core Laboratory, Department of Medical Research, Chang Gung Memorial Hospital, Taoyuan, Taiwan
- Benjamin Kaffenberger
- 4Department of Dermatology, Ohio State University Wexner Medical Center, Columbus, OH, United States
- Daniela Kroshinsky
- 5Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, United States
- Rannakoe J. Lehloenya
- 6Division of Dermatology, Department of Medicine, University of Cape Town, Cape Town, South Africa
- Michelle Martin-Pozo
- Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States
- Robert G. Micheletti
- 5Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, United States
- Maja Mockenhaupt
- 8Dokumentationszentrum schwerer Hautreaktionen (dZh), Department of Dermatology, Medical Center and Medical Faculty, University of Freiburg, Freiburg, Germany
- Keisuke Nagao
- National Institute of Arthritis and Musculoskeletal and Skin (NIAMS), National Institutes of Health (NIH), Bethesda, MD, United States
- Suman Pakala
- Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States
- Amy Palubinsky
- Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States
- Helena B. Pasieka
- Departments of Dermatology and Medicine, Uniformed Services University, Bethesda, MD, United States
- Helena B. Pasieka
- 9The Burn Center, MedStar Washington Hospital Center, Washington, D.C., DC, United States
- Helena B. Pasieka
- 0Department of Dermatology, MedStar Health/Georgetown University, Washington, D.C., DC, United States
- Jonathan Peter
- 1Division of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa
- Munir Pirmohamed
- 2Department of Pharmacology and Therapeutics, University of Liverpool, Liverpool, United Kingdom
- Melissa Reyes
- 3Center for Drug Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States
- Hajirah N. Saeed
- 4Massachusetts Eye and Ear, Harvard Medical School, Boston, MA, United States
- Jeffery Shupp
- 5Department 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
- Chonlaphat Sukasem
- 6Department of Pathology, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Bangkok, Thailand
- Jhih Yu Syu
- 7Department of Cell Biology and Anatomy, College of Medicine, National Cheng Kung University, Tainan, Taiwan
- Mayumi Ueta
- 8Department of Frontier Medical Science and Technology for Ophthalmology, Kyoto Prefectural University of Medicine, Kyoto, Japan
- Li Zhou
- 9Division of General Internal Medicine and Primary Care, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, United States
- Wan-Chun Chang
- 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
- Patrice Becker
- 0Division of Allergy, Immunology, and Transplantation, National Institute of Allergy and Infectious Disease, Bethesda, MD, United States
- Teresa Bellon
- 1Drug Hypersensitivity Laboratory, La Paz Health Research Institute (IdiPAZ), Madrid, Spain
- Kemberlee Bonnet
- 2Department of Psychology, Vanderbilt University, Nashville, TN, United States
- Gianpiero Cavalleri
- The SFI Centre for Research Training in Genomics Data Science, Dublin, Ireland
- James Chodosh
- 3University of New Mexico School of Medicine, Albuquerque, NM, United States
- Anna K. Dewan
- 4Department of Dermatology, Vanderbilt University Medical Center, Nashville, TN, United States
- Arturo Dominguez
- 5Department of Dermatology and Internal Medicine, UT Southwestern Medical Center, Dallas, TX, United States
- Xinzhong Dong
- 6Department of Neuroscience, Johns Hopkins University School of Medicine, Baltimore, MD, United States
- Elena Ezhkova
- 7Department of Cell, Developmental, and Regenerative Biology and Dermatology, Black Family Stem Cell Institute, Mount Sinai School of Medicine, New York, NY, United States
- Esther Fuchs
- 8Department of Obstetrics and Gynecology, University of Washington, Seattle, WA, United States
- Jennifer Goldman
- 9Division of Pediatric Infectious Diseases and Clinical Pharmacology, Children’s Mercy, Kansas City, MO, United States
- Sonia Himed
- 0College of Medicine, University of Cincinnati, Cincinnati, OH, United States
- Simon Mallal
- 1Division of Infectious Diseases, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States
- Alina Markova
- 2Department of Dermatology, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, NY, United States
- Kerry McCawley
- 3Stevens-Johnson Syndrome Foundation, Westminster, CO, United States
- Allison E. Norton
- 4Division of Pediatric Allergy, Immunology, and Pulmonary Medicine, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, United States
- David Ostrov
- 5Department of Pathology, Immunology and Laboratory Medicine, University of Florida, Gainesville, FL, United States
- Michael Phan
- 6Division of Pharmacovigilance-I, Center for Drug Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, MD, United States
- Arthur Sanford
- 7Division of Trauma, Surgical Critical Care, and Burns, Loyola University Medical Center, Chicago, IL, United States
- David Schlundt
- 2Department of Psychology, Vanderbilt University, Nashville, TN, United States
- Daniel Schneider
- 8Department of Psychiatry and Surgery, MedStar Washington Hospital Center, Georgetown University School of Medicine, Washington, D.C., DC, United States
- Neil Shear
- Department of Dermatology, Emek Medical Center, Afula, Israel
- Kanade Shinkai
- 9Department of Dermatology, University of California, San Francisco, San Francisco, CA, United States
- Eric Tkaczyk
- 0Department of Veterans Affairs, Vanderbilt Dermatology Translational Research Clinic (VDTRC.org), Nashville, TN, United States
- Jason A. Trubiano
- 1Department of Infectious Diseases and Medicine, Austin Health, University of Melbourne, Melbourne, VIC, Australia
- Simona Volpi
- 2National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, MD, United States
- Charles S. Bouchard
- 3Department of Opthalmology, Loyola University Medical Center, Chicago, IL, United States
- Sherrie J. Divito
- 5Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, United States
- Elizabeth J. Phillips
- Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States
- DOI
- https://doi.org/10.3389/fmed.2023.1213889
- Journal volume & issue
-
Vol. 10
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.
Keywords
- Stevens-Johnson Syndrome
- Toxic Epidermal Necrolysis
- severe adverse cutaneous drug reactions
- HLA genotyping
- pharmacogenomics
- body surface area
