Updates in SJS/TEN: collaboration, innovation, and community
Issued Date
2023-01-01
Resource Type
eISSN
2296858X
Scopus ID
2-s2.0-85175048676
Journal Title
Frontiers in Medicine
Volume
10
Rights Holder(s)
SCOPUS
Bibliographic Citation
Frontiers in Medicine Vol.10 (2023)
Suggested Citation
Marks M.E., Botta R.K., Abe R., Beachkofsky T.M., Boothman I., Carleton B.C., Chung W.H., Cibotti R.R., Dodiuk-Gad R.P., Grimstein C., Hasegawa A., Hoofnagle J.H., Hung S.I., Kaffenberger B., Kroshinsky D., Lehloenya R.J., Martin-Pozo M., Micheletti R.G., Mockenhaupt M., Nagao K., Pakala S., Palubinsky A., Pasieka H.B., Peter J., Pirmohamed M., Reyes M., Saeed H.N., Shupp J., Sukasem C., Syu J.Y., Ueta M., Zhou L., Chang W.C., Becker P., Bellon T., Bonnet K., Cavalleri G., Chodosh J., Dewan A.K., Dominguez A., Dong X., Ezhkova E., Fuchs E., Goldman J., Himed S., Mallal S., Markova A., McCawley K., Norton A.E., Ostrov D., Phan M., Sanford A., Schlundt D., Schneider D., Shear N., Shinkai K., Tkaczyk E., Trubiano J.A., Volpi S., Bouchard C.S., Divito S.J., Phillips E.J. Updates in SJS/TEN: collaboration, innovation, and community. Frontiers in Medicine Vol.10 (2023). doi:10.3389/fmed.2023.1213889 Retrieved from: https://repository.li.mahidol.ac.th/handle/20.500.14594/90921
Title
Updates in SJS/TEN: collaboration, innovation, and community
Author(s)
Marks M.E.
Botta R.K.
Abe R.
Beachkofsky T.M.
Boothman I.
Carleton B.C.
Chung W.H.
Cibotti R.R.
Dodiuk-Gad R.P.
Grimstein C.
Hasegawa A.
Hoofnagle J.H.
Hung S.I.
Kaffenberger B.
Kroshinsky D.
Lehloenya R.J.
Martin-Pozo M.
Micheletti R.G.
Mockenhaupt M.
Nagao K.
Pakala S.
Palubinsky A.
Pasieka H.B.
Peter J.
Pirmohamed M.
Reyes M.
Saeed H.N.
Shupp J.
Sukasem C.
Syu J.Y.
Ueta M.
Zhou L.
Chang W.C.
Becker P.
Bellon T.
Bonnet K.
Cavalleri G.
Chodosh J.
Dewan A.K.
Dominguez A.
Dong X.
Ezhkova E.
Fuchs E.
Goldman J.
Himed S.
Mallal S.
Markova A.
McCawley K.
Norton A.E.
Ostrov D.
Phan M.
Sanford A.
Schlundt D.
Schneider D.
Shear N.
Shinkai K.
Tkaczyk E.
Trubiano J.A.
Volpi S.
Bouchard C.S.
Divito S.J.
Phillips E.J.
Botta R.K.
Abe R.
Beachkofsky T.M.
Boothman I.
Carleton B.C.
Chung W.H.
Cibotti R.R.
Dodiuk-Gad R.P.
Grimstein C.
Hasegawa A.
Hoofnagle J.H.
Hung S.I.
Kaffenberger B.
Kroshinsky D.
Lehloenya R.J.
Martin-Pozo M.
Micheletti R.G.
Mockenhaupt M.
Nagao K.
Pakala S.
Palubinsky A.
Pasieka H.B.
Peter J.
Pirmohamed M.
Reyes M.
Saeed H.N.
Shupp J.
Sukasem C.
Syu J.Y.
Ueta M.
Zhou L.
Chang W.C.
Becker P.
Bellon T.
Bonnet K.
Cavalleri G.
Chodosh J.
Dewan A.K.
Dominguez A.
Dong X.
Ezhkova E.
Fuchs E.
Goldman J.
Himed S.
Mallal S.
Markova A.
McCawley K.
Norton A.E.
Ostrov D.
Phan M.
Sanford A.
Schlundt D.
Schneider D.
Shear N.
Shinkai K.
Tkaczyk E.
Trubiano J.A.
Volpi S.
Bouchard C.S.
Divito S.J.
Phillips E.J.
Author's Affiliation
Niigata University, Graduate School of Medical and Dental Science
Instituto de Investigación Sanitaria del Hospital Universitario La Paz
UNM School of Medicine
Chang Gung Memorial Hospital
Vanderbilt University Medical Center
Kyoto Prefectural University of Medicine
Emek Medical Center
Washington Hospital Center
University of Melbourne
Universität Freiburg
Georgetown University
University of California, San Francisco
University of British Columbia, Faculty of Medicine
Technion - Israel Institute of Technology
University of Liverpool
University of Cincinnati College of Medicine
National Institute of Allergy and Infectious Diseases (NIAID)
Loyola University Medical Center
University of Toronto
Faculty of Medicine Ramathibodi Hospital, Mahidol University
University of Washington
The Ohio State University Wexner Medical Center
UT Southwestern Medical School
National Human Genome Research Institute (NHGRI)
Icahn School of Medicine at Mount Sinai
Food and Drug Administration
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Weill Cornell Medicine
University of Florida College of Medicine
Uniformed Services University of the Health Sciences
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Vanderbilt University
National Cheng Kung University College of Medicine
Harvard Medical School
Georgetown University School of Medicine
Johns Hopkins School of Medicine
University of Cape Town
SFI Centre for Research Training in Machine Learning
Stevens-Johnson Syndrome Foundation
Children's Mercy
Instituto de Investigación Sanitaria del Hospital Universitario La Paz
UNM School of Medicine
Chang Gung Memorial Hospital
Vanderbilt University Medical Center
Kyoto Prefectural University of Medicine
Emek Medical Center
Washington Hospital Center
University of Melbourne
Universität Freiburg
Georgetown University
University of California, San Francisco
University of British Columbia, Faculty of Medicine
Technion - Israel Institute of Technology
University of Liverpool
University of Cincinnati College of Medicine
National Institute of Allergy and Infectious Diseases (NIAID)
Loyola University Medical Center
University of Toronto
Faculty of Medicine Ramathibodi Hospital, Mahidol University
University of Washington
The Ohio State University Wexner Medical Center
UT Southwestern Medical School
National Human Genome Research Institute (NHGRI)
Icahn School of Medicine at Mount Sinai
Food and Drug Administration
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Weill Cornell Medicine
University of Florida College of Medicine
Uniformed Services University of the Health Sciences
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Vanderbilt University
National Cheng Kung University College of Medicine
Harvard Medical School
Georgetown University School of Medicine
Johns Hopkins School of Medicine
University of Cape Town
SFI Centre for Research Training in Machine Learning
Stevens-Johnson Syndrome Foundation
Children's Mercy
Other Contributor(s)
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.