SJS/TEN 2019: From science to translation

Wan-Chun Chang¹, Riichiro Abe², Paul Anderson³, Wanpen Anderson³, Michael R Ardern-Jones⁴, Thomas M Beachkofsky⁵, Teresa Bellón⁶, Agnieszka K Biala¹, Charles Bouchard⁷, Gianpiero L Cavalleri⁸, Nicole Chapman⁹, James Chodosh¹⁰, Hyon K Choi¹¹, Ricardo R Cibotti¹², Sherrie J Divito¹³, Karen Dewar¹⁴, Ulrike Dehaeck¹⁵, Mahyar Etminan¹⁶, Diane Forbes¹⁷, Esther Fuchs¹⁸, Jennifer L Goldman¹⁹, James H Holmes 4th²⁰, Elyse A Hope²¹, Shuen-Iu Hung²², Chia-Ling Hsieh²³, Alfonso Iovieno²⁴, Julienne Jagdeo²¹, Mee Kum Kim²⁵, David M Koelle²⁶, Mario E Lacouture²⁷, Sophie Le Pallec²⁸, Rannakoe J Lehloenya²⁹, Robyn Lim³⁰, Angie Lowe³¹, Jean McCawley³, Julie McCawley³, Robert G Micheletti³², Maja Mockenhaupt³³, Katie Niemeyer³⁴, Michael A Norcross³⁵, Douglas Oboh³, Cristina Olteanu³⁶, Helena B Pasieka³⁷, Jonathan Peter³⁸, Munir Pirmohamed³⁹, Michael Rieder⁴⁰, Hajirah N Saeed¹⁰, Neil H Shear⁴¹, Christine Shieh⁴², Sabine Straus⁴³, Chonlaphat Sukasem⁴⁴, Cynthia Sung⁴⁵, Jason A Trubiano⁴⁶, Sheng-Ying Tsou²³, Mayumi Ueta⁴⁷, Simona Volpi⁴⁸, Chen Wan²¹, Hongsheng Wang⁴⁹, Zhao-Qing Wang²³, Jessica Weintraub⁵⁰, Cindy Whale⁵¹, Lisa M Wheatley⁵², Sonia Whyte-Croasdaile⁵¹, Kristina B Williams⁵³, Galen Wright¹, Sonia N Yeung²⁴, Li Zhou⁵⁴, Wen-Hung Chung⁵⁵, Elizabeth J Phillips⁵⁶, Bruce C Carleton⁵⁷

Affiliations

¹ Division of Translational Therapeutics, Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.
² Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan.
³ Stevens-Johnson Syndrome Foundation, Westminster, CO, USA.
⁴ Faculty of Medicine, University of Southampton, Southampton General Hospital, Southampton, UK.
⁵ Wilford Hall Ambulatory Surgical Center, Lackland Air Force Base, TX, USA.
⁶ Drug Hypersensitivity Group, Hospital La Paz Institute for Health Research (IdiPAZ), Madrid, Spain.
⁷ Loyola University Medical Center, Chicago, IL, USA.
⁸ School of Pharmacy and Molecular and Cellular Therapeutics, Royal College of Surgeons in Ireland, Dublin, Ireland; FutureNeuro SFI Research Centre, Royal College of Surgeons in Ireland, Dublin, Ireland.
⁹ SJS Awareness Oregon, Klamath Falls, OR, USA.
¹⁰ Massachusetts Eye and Ear, Harvard Medical School, Boston, MA, USA.
¹¹ Division of Rheumatology, Allergy and Immunology, Massachusetts General Hospital, Boston, MA, USA.
¹² National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH, Bethesda, MD, USA.
¹³ Department of Dermatology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.
¹⁴ Genome Canada, Ottawa, ON, Canada.
¹⁵ Department of Obstetrics and Gynecology, University of British Columbia, Vancouver, BC, Canada.
¹⁶ Department of Ophthalmology and Visual Sciences, University of British Columbia, Vancouver, BC, Canada.
¹⁷ Canadian Institutes of Health Research, Ottawa, ON, Canada.
¹⁸ Department of Obstetrics and Gynecology, University of Washington, Seattle, WA, USA.
¹⁹ Children's Mercy Hospital Kansas City, Kansas City, MO, USA.
²⁰ Wake Forest University School of Medicine, WFBMC Burn Center, Winston-Salem, NC, USA.
²¹ Genome British Columbia, Vancouver, BC, Canada.
²² Cancer Vaccine and Immune Cell Therapy Core Laboratory, Chang Gung Immunology Consortium, Chang Gung Memorial Hospital, Linkou, Taoyuan, Taiwan; Institute of Pharmacology, National Yang-Ming University, Taipei, Taiwan.
²³ Eden Social Welfare Foundation, Taipei, Taiwan.
²⁴ Department of Ophthalmology and Visual Sciences, University of British Columbia, Vancouver General Hospital Eye Care Center, Vancouver, BC, Canada.
²⁵ Department of Ophthalmology, Seoul National University College of Medicine, Seoul, South Korea.
²⁶ Department of Medicine, University of Washington, Seattle, WA, USA.
²⁷ Memorial Sloan Kettering Cancer Center, New York, NY, USA.
²⁸ Association des malades des syndromes de Lyell et de Stevens-Johnson (Amalyste), Paris, France.
²⁹ Division of Dermatology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
³⁰ Health Products and Food Branch, Health Canada, Ottawa, ON, Canada.
³¹ SJS/TEN International Awareness (STIA), Lucky Lake, SK, Canada.
³² Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
³³ Dokumentationszentrum schwerer Hautreaktionen (dZh), Department of Dermatology, Medical Center and Medical Faculty, University of Freiburg, Freiburg, Germany.
³⁴ SJ Syndrome of Texas, Austin, TX, USA.
³⁵ Laboratory of Immunology, Division of Biotechnology Review and Research III (DBRR III), Office of Biotechnology Products (OBP), Office of Pharmaceutical Quality (OPQ), Center for Drug Evaluation and Research (CDER), FDA, Silver Spring, MD, USA.
³⁶ Division of Dermatology, Department of Medicine, University of Alberta, Edmonton, AB, Canada.
³⁷ Department of Dermatology, MedStar Washington Hospital Center, Washington, DC, USA.
³⁸ Division of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
³⁹ Department of Molecular and Clinical Pharmacology, University of Liverpool, Liverpool, UK.
⁴⁰ Department of Paediatrics, Children's Hospital/London Health Sciences Centre, Schulich School of Medicine & Dentistry, Western University, London, ON, Canada.
⁴¹ Sunnybrook Health Sciences Centre, University of Toronto, ON, Canada.
⁴² Department of Ophthalmology, Vanderbilt Eye Institute, Nashville, TN, USA.
⁴³ Dutch Medicines Evaluation Board, Pharmacovigilance Risk Assessment Committee, European Medicines Agency, Utrecht, the Netherlands.
⁴⁴ Ramathibodi Hospital, Mahidol University, Bangkok, Thailand.
⁴⁵ Health Products Regulation Group, Health Sciences Authority Singapore, Duke-NUS Medical School, Singapore.
⁴⁶ Department of Infectious Diseases, Austin Health, Heidelberg, Germany; Department of Medicine, University of Melbourne, Victoria, Australia.
⁴⁷ Department of Frontier Medical Science and Technology for Ophthalmology, Kyoto Prefectural University of Medicine, Kyoto, Japan.
⁴⁸ National Human Genome Research Institute, NIH, Bethesda, MD, USA.
⁴⁹ Institute of Dermatology, Chinese Academy of Medical Sciences, National Center for STD and Leprosy Control, China CDC, Nanjing, China.
⁵⁰ Division of Pharmacovigilance I, Office of Surveillance and Epidemiology, Center for Drug Evaluation and Research, U.S. Food and Drug Administration, USA.
⁵¹ SJS Canada, Brantford, ON, Canada.
⁵² National Institute of Allergy and Infectious Diseases, NIH, Bethesda, MD, USA.
⁵³ Department of Pathology, Microbiology and Immunology, Vanderbilt University Medical Center, Nashville, TN, USA.
⁵⁴ Division of General Internal Medicine and Primary Care, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.
⁵⁵ Department of Dermatology, Drug Hypersensitivity Clinical and Research Center, Chang Gung Memorial Hospital, Linkou, Taipei, Keelung, Taoyuan, Taiwan; Cancer Vaccine and Immune Cell Therapy Core Laboratory, Chang Gung Immunology Consortium, Chang Gung Memorial Hospital, Linkou, Taoyuan, Taiwan; College of Medicine, Chang Gung University, Taoyuan, Taiwan; Department of Dermatology, Xiamen Chang Gung Hospital, Xiamen, China; Whole-Genome Research Core Laboratory of Human Diseases, Chang Gung Memorial Hospital, Keelung, Taiwan. Electronic address: chung1@cgmh.org.tw.
⁵⁶ Department of Pathology, Microbiology and Immunology, Vanderbilt University Medical Center, Nashville, TN, USA; Institute for Immunology and Infectious Diseases, Murdoch University, Murdoch, Australia; Division of Infectious Diseases, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA; Department of Pharmacology, Vanderbilt University Medical Center, Nashville, TN, USA. Electronic address: elizabeth.j.phillips@vumc.org.
⁵⁷ Division of Translational Therapeutics, Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada. Electronic address: bcarleton@popi.ubc.ca.

PMID: 32192826
PMCID: PMC7261636
DOI: 10.1016/j.jdermsci.2020.02.003

SJS/TEN 2019: From science to translation

Wan-Chun Chang et al. J Dermatol Sci. 2020 Apr.

. 2020 Apr;98(1):2-12.

doi: 10.1016/j.jdermsci.2020.02.003. Epub 2020 Mar 7.

Authors

Affiliations

¹ Division of Translational Therapeutics, Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.
² Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan.
³ Stevens-Johnson Syndrome Foundation, Westminster, CO, USA.
⁴ Faculty of Medicine, University of Southampton, Southampton General Hospital, Southampton, UK.
⁵ Wilford Hall Ambulatory Surgical Center, Lackland Air Force Base, TX, USA.
⁶ Drug Hypersensitivity Group, Hospital La Paz Institute for Health Research (IdiPAZ), Madrid, Spain.
⁷ Loyola University Medical Center, Chicago, IL, USA.
⁸ School of Pharmacy and Molecular and Cellular Therapeutics, Royal College of Surgeons in Ireland, Dublin, Ireland; FutureNeuro SFI Research Centre, Royal College of Surgeons in Ireland, Dublin, Ireland.
⁹ SJS Awareness Oregon, Klamath Falls, OR, USA.
¹⁰ Massachusetts Eye and Ear, Harvard Medical School, Boston, MA, USA.
¹¹ Division of Rheumatology, Allergy and Immunology, Massachusetts General Hospital, Boston, MA, USA.
¹² National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH, Bethesda, MD, USA.
¹³ Department of Dermatology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.
¹⁴ Genome Canada, Ottawa, ON, Canada.
¹⁵ Department of Obstetrics and Gynecology, University of British Columbia, Vancouver, BC, Canada.
¹⁶ Department of Ophthalmology and Visual Sciences, University of British Columbia, Vancouver, BC, Canada.
¹⁷ Canadian Institutes of Health Research, Ottawa, ON, Canada.
¹⁸ Department of Obstetrics and Gynecology, University of Washington, Seattle, WA, USA.
¹⁹ Children's Mercy Hospital Kansas City, Kansas City, MO, USA.
²⁰ Wake Forest University School of Medicine, WFBMC Burn Center, Winston-Salem, NC, USA.
²¹ Genome British Columbia, Vancouver, BC, Canada.
²² Cancer Vaccine and Immune Cell Therapy Core Laboratory, Chang Gung Immunology Consortium, Chang Gung Memorial Hospital, Linkou, Taoyuan, Taiwan; Institute of Pharmacology, National Yang-Ming University, Taipei, Taiwan.
²³ Eden Social Welfare Foundation, Taipei, Taiwan.
²⁴ Department of Ophthalmology and Visual Sciences, University of British Columbia, Vancouver General Hospital Eye Care Center, Vancouver, BC, Canada.
²⁵ Department of Ophthalmology, Seoul National University College of Medicine, Seoul, South Korea.
²⁶ Department of Medicine, University of Washington, Seattle, WA, USA.
²⁷ Memorial Sloan Kettering Cancer Center, New York, NY, USA.
²⁸ Association des malades des syndromes de Lyell et de Stevens-Johnson (Amalyste), Paris, France.
²⁹ Division of Dermatology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
³⁰ Health Products and Food Branch, Health Canada, Ottawa, ON, Canada.
³¹ SJS/TEN International Awareness (STIA), Lucky Lake, SK, Canada.
³² Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
³³ Dokumentationszentrum schwerer Hautreaktionen (dZh), Department of Dermatology, Medical Center and Medical Faculty, University of Freiburg, Freiburg, Germany.
³⁴ SJ Syndrome of Texas, Austin, TX, USA.
³⁵ Laboratory of Immunology, Division of Biotechnology Review and Research III (DBRR III), Office of Biotechnology Products (OBP), Office of Pharmaceutical Quality (OPQ), Center for Drug Evaluation and Research (CDER), FDA, Silver Spring, MD, USA.
³⁶ Division of Dermatology, Department of Medicine, University of Alberta, Edmonton, AB, Canada.
³⁷ Department of Dermatology, MedStar Washington Hospital Center, Washington, DC, USA.
³⁸ Division of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
³⁹ Department of Molecular and Clinical Pharmacology, University of Liverpool, Liverpool, UK.
⁴⁰ Department of Paediatrics, Children's Hospital/London Health Sciences Centre, Schulich School of Medicine & Dentistry, Western University, London, ON, Canada.
⁴¹ Sunnybrook Health Sciences Centre, University of Toronto, ON, Canada.
⁴² Department of Ophthalmology, Vanderbilt Eye Institute, Nashville, TN, USA.
⁴³ Dutch Medicines Evaluation Board, Pharmacovigilance Risk Assessment Committee, European Medicines Agency, Utrecht, the Netherlands.
⁴⁴ Ramathibodi Hospital, Mahidol University, Bangkok, Thailand.
⁴⁵ Health Products Regulation Group, Health Sciences Authority Singapore, Duke-NUS Medical School, Singapore.
⁴⁶ Department of Infectious Diseases, Austin Health, Heidelberg, Germany; Department of Medicine, University of Melbourne, Victoria, Australia.
⁴⁷ Department of Frontier Medical Science and Technology for Ophthalmology, Kyoto Prefectural University of Medicine, Kyoto, Japan.
⁴⁸ National Human Genome Research Institute, NIH, Bethesda, MD, USA.
⁴⁹ Institute of Dermatology, Chinese Academy of Medical Sciences, National Center for STD and Leprosy Control, China CDC, Nanjing, China.
⁵⁰ Division of Pharmacovigilance I, Office of Surveillance and Epidemiology, Center for Drug Evaluation and Research, U.S. Food and Drug Administration, USA.
⁵¹ SJS Canada, Brantford, ON, Canada.
⁵² National Institute of Allergy and Infectious Diseases, NIH, Bethesda, MD, USA.
⁵³ Department of Pathology, Microbiology and Immunology, Vanderbilt University Medical Center, Nashville, TN, USA.
⁵⁴ Division of General Internal Medicine and Primary Care, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.
⁵⁵ Department of Dermatology, Drug Hypersensitivity Clinical and Research Center, Chang Gung Memorial Hospital, Linkou, Taipei, Keelung, Taoyuan, Taiwan; Cancer Vaccine and Immune Cell Therapy Core Laboratory, Chang Gung Immunology Consortium, Chang Gung Memorial Hospital, Linkou, Taoyuan, Taiwan; College of Medicine, Chang Gung University, Taoyuan, Taiwan; Department of Dermatology, Xiamen Chang Gung Hospital, Xiamen, China; Whole-Genome Research Core Laboratory of Human Diseases, Chang Gung Memorial Hospital, Keelung, Taiwan. Electronic address: chung1@cgmh.org.tw.
⁵⁶ Department of Pathology, Microbiology and Immunology, Vanderbilt University Medical Center, Nashville, TN, USA; Institute for Immunology and Infectious Diseases, Murdoch University, Murdoch, Australia; Division of Infectious Diseases, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA; Department of Pharmacology, Vanderbilt University Medical Center, Nashville, TN, USA. Electronic address: elizabeth.j.phillips@vumc.org.
⁵⁷ Division of Translational Therapeutics, Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada. Electronic address: bcarleton@popi.ubc.ca.

PMID: 32192826
PMCID: PMC7261636
DOI: 10.1016/j.jdermsci.2020.02.003

Erratum in

Corrigendum to 'SJS/TEN 2019: From science to translation' [J. Dermatol. Sci. 98/1 (2020) 2-12].
Chang WC, Abe R, Anderson P, Anderson W, Ardern-Jones MR, Beachkofsky TM, Bellón T, Biala AK, Bouchard C, Cavalleri GL, Chapman N, Chodosh J, Choi HK, Cibotti RR, Divito SJ, Dewar K, Dehaeck U, Etminan M, Forbes D, Fuchs E, Goldman JL, Holmes JH 4th, Hope EA, Hung SI, Hsieh CL, Iovieno A, Jagdeo J, Kim MK, Koelle DM, Lacouture ME, Le Pallec S, Lehloenya RJ, Lim R, Lowe A, McCawley J, McCawley J, Micheletti RG, Mockenhaupt M, Niemeyer K, Norcross MA, Oboh D, Olteanu C, Pasieka HB, Peter J, Pirmohamed M, Rieder M, Saeed HN, Shear NH, Shieh C, Straus S, Sukasem C, Sung C, Trubiano JA, Tsou SY, Ueta M, Volpi S, Wan C, Wang H, Wang ZQ, Weintraub J, Whale C, Wheatley LM, Whyte-Croasdaile S, Williams KB, Wright G, Yeung SN, Zhou L, Chung WH, Phillips EJ, Carleton BC. Chang WC, et al. J Dermatol Sci. 2021 Nov;104(2):146-147. doi: 10.1016/j.jdermsci.2021.09.008. Epub 2021 Nov 9. J Dermatol Sci. 2021. PMID: 34763988 Free PMC article. No abstract available.

Abstract

Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN) are potentially life-threatening, immune-mediated adverse reactions characterized by widespread erythema, epidermal necrosis, and detachment of skin and mucosa. Efforts to grow and develop functional international collaborations and a multidisciplinary interactive network focusing on SJS/TEN as an uncommon but high burden disease will be necessary to improve efforts in prevention, early diagnosis and improved acute and long-term management. SJS/TEN 2019: From Science to Translation was a 1.5-day scientific program held April 26-27, 2019, in Vancouver, Canada. The meeting successfully engaged clinicians, researchers, and patients and conducted many productive discussions on research and patient care needs.

Keywords: Human leukocyte antigen (HLA); Pharmacogenomics; Pharmacovigilance; Severe cutaneous adverse reaction (SCAR); Stevens-Johnson syndrome (SJS); Toxic epidermal necrolysis (TEN).

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Conflict of interest statement

CONFLICTS OF INTEREST

G. L. Cavalleri has received collaborative research support from Congenica. R. Lim is a Senior Science Advisor for Health Products and Food Branch. D. M. Koelle is a member of advisory boards of Curevo, Gilead, and MaxHealth. M. E. Lacouture serves as a consultant/speaker for Legacy Healthcare Services, Adgero Bio Pharmaceuticals, Amryt Pharmaceuticals, Celldex Therapeutics, Debiopharm, Galderma Research and Development, Johnson & Johnson, Novocure Inc., Lindi, Merck Sharp and Dohme Corporation, Helsinn Healthcare SA, Janssen Research & Development LLC, Menlo Therapeutics, Novartis Pharmaceuticals Corporation, F. Hoffmann-La Roche AG, Abbvie Inc., Boehringer Ingelheim Pharma Gmbh & Co. KG, Allergan Inc., Amgen Inc., E.R. Squibb & Sons LLC, EMD Serono Inc., AstraZeneca Pharmaceuticals LP, Genentech Inc., Leo Pharma Inc., Seattle Genetics, Bayer, Manner SAS, Lutris, Pierre Fabre, Paxman Coolers, Adjucare, Dignitana, Biotechspert, Teva Mexico, Parexel, OnQuality Pharmaceuticals Ltd., Novartis, Our Brain Bank, and Takeda Millenium. M. E. Lacouture also receives research funding from Veloce, US Biotest, Berg, Bristol-Myers Squibb, Lutris, Paxman, and Novocure. M. Mockenhaupt is a member of advisory boards or expert panels (pharmaceutical companies- Merck and Pfizer) and has served as an expert in litigation related to severe cutaneous adverse reactions. M. Pirmohamed has received research support from International Serious Adverse Event Consortium (ISAEC). The rest of the authors declare that they have no relevant conflicts of interest.

Figures

**Figure 1.. SJS/TEN 2019: From Science to Translation Conference Participants.**
The ***SJS/TEN 2019: From Science to Translation*** conference was organized by the three co-chairs of the congress: Drs. Elizabeth J. Phillips (Vanderbilt University Medical Center), Bruce C. Carleton (University of British Columbia), and Wen-Hung Chung (Chang Gung University). **a. Global distribution of participants**. A total of 164 participants, representing 19 countries across six continents, engaged in this meeting, which took place at the British Columbia Children’s Hospital Research Institute in Vancouver, Canada. **b. Regional Networks and Registries and SJS patient support foundations**. This was of special significance because it was the largest SJS/TEN event that gathered together 16 government representatives, as well as 12 regional SCAR networks and registries from countries in North America, Europe, Asia, Africa, and Australia. Forty-three local and international SJS/TEN survivors, their families, and local community advocacy groups also attended. Six representatives from government drug regulatory and research funding agencies in the United States and Canada provided updates on regulatory science and funding opportunities related to SCAR and drug safety. **c. Each sector shows the percentage of each group of participants**. Participants comprised 43 (27%) patient participants, 29 (18%) dermatologists, 23 (14%) ophthalmologists, 23 (14%) experts in pharmacogenomics or clinical pharmacology, 17 (10%) other medical disciplines, 16 (10%) government officers, 10 (6%) basic science researchers, and 3 (2%) from the pharmaceutical industry.

See this image and copyright information in PMC

References

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SJS/TEN 2019: From science to translation

Affiliations

SJS/TEN 2019: From science to translation

Authors

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Erratum in

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Conflict of interest statement

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