SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation

White, Katie D.; Abe, Riichiro; Ardern‐Jones, Michael R.; Beachkofsky, Thomas M.; Bouchard, Charles S.; Carleton, Bruce; Chodosh, James; Cibotti, Ricardo; Davis, Robert L.; Denny, Joshua C.; Dodiuk‐Gad, Roni P.; Ergen, Elizabeth N.; Goldman, Jennifer L.; Holmes, James H.; Hung, Shuen Iu; Lacouture, Mario E.; Lehloenya, Rannakoe; Mallal, S.; Manolio, Teri A.; Micheletti, Robert G.; Mitchell, Caroline; Mockenhaupt, Maja; Ostrov, David A.; Pavlos, Rebecca; Pirmohamed, Munir; Pope, Elena; Redwood, Alec; Rosenbach, Misha; Rosenblum, Michael D.; Roujeau, J C; Saavedra, Arturo; Saeed, Hajirah N.; Struewing, Jeffery P.; Sueki, Hirohiko; Sukasem, Chonlaphat; Sung, Cynthia; Trubiano, Jason A; Weintraub, Jessica; Wheatley, Lisa M.; Williams, Kristina; Worley, Brandon; Chung, Wen Hung; Shear, Neil H.; Phillips, Elizabeth

doi:10.1016/j.jaip.2017.11.023

Cited by 149 publications

(156 citation statements)

References 202 publications

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“…ophthalmological or pulmonary sequelae, post-traumatic stress disorder), associated healthcare costs and mortality rate. [4][5][6][7][8][9] Few data are available regarding incidence of and mortality from epidermal necrolysis. 4 Experts in SJS/TEN have recently proposed an annual incidence of one to five cases per million individuals.…”

Section: What Does This Study Add?mentioning

confidence: 99%

“…[4][5][6][7][8][9] Few data are available regarding incidence of and mortality from epidermal necrolysis. 4 Experts in SJS/TEN have recently proposed an annual incidence of one to five cases per million individuals. 4 Hospital-based studies and studies from large electronic databases have found an annual incidence of 1-13 cases per million individuals.…”

Section: What Does This Study Add?mentioning

confidence: 99%

“…4 Experts in SJS/TEN have recently proposed an annual incidence of one to five cases per million individuals. 4 Hospital-based studies and studies from large electronic databases have found an annual incidence of 1-13 cases per million individuals. [9][10][11][12][13][14] The overall mortality rate is usually reported to be between 10% and 20%.…”

Section: What Does This Study Add?mentioning

confidence: 99%

“…severe pain, organ involvement, long hospital stay), long‐term morbidity (e.g. ophthalmological or pulmonary sequelae, post‐traumatic stress disorder), associated healthcare costs and mortality rate …”

mentioning

confidence: 99%

“…Few data are available regarding incidence of and mortality from epidermal necrolysis . Experts in SJS/TEN have recently proposed an annual incidence of one to five cases per million individuals .…”

mentioning

confidence: 99%

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Incidence of and mortality from epidermal necrolysis (Stevens–Johnson syndrome/toxic epidermal necrolysis) in France during 2003–16: a four‐source capture–recapture estimate

et al. 2019

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Summary Background Because of its rarity, the exact incidence of and mortality from epidermal necrolysis (Stevens–Johnson syndrome/toxic epidermal necrolysis) is difficult to establish and closely depends on the size and type of the data source. Objectives To estimate the incidence of and mortality due to epidermal necrolysis in France over a 14‐year period. Methods Data from four national databases were analysed. A capture–recapture analysis was performed. Results A total of 2635 incident cases of epidermal necrolysis were recorded in at least one of the four databases during the study period [males: 47·9%; median age: 52 (interquartile range 25–72) years]. On capture–recapture analysis, the estimated total number of cases was 5686, for an overall estimated annual incidence of 6·5 (95% confidence interval 4·1–8·9) cases per million inhabitants. The estimated annual incidence rates were 4·1 (0·3–7·9) cases per million inhabitants < 20 years of age, 3·9 (1·5–6·3) cases per million inhabitants aged 20–64 years and 13·7 (5·4–22·0) cases per million inhabitants ≥ 65 years of age. The estimated overall annual mortality rate from epidermal necrolysis was 0·9 (0·1–1·8) case per million inhabitants. It was 0·6 (0·1–1·5) case per million inhabitants aged 20–64 years and 2·8 (0·9–6·6) cases per million inhabitants ≥ 65 years of age (deaths in people < 20 years old were too rare to provide an accurate estimate). Conclusions The annual incidence of epidermal necrolysis is higher than the one to five cases per million inhabitants usually reported. Such estimations could be helpful in establishing appropriate healthcare plans for people with epidermal necrolysis, in particular the need for specialized care units. What's already known about this topic? Few data are available regarding incidence of and mortality from epidermal necrolysis in the general population. Experts in epidermal necrolysis have recently proposed an annual incidence of one to five cases per million individuals. The overall mortality rate is usually reported to be between 10% and 20%. What does this study add? Using a four‐source capture–recapture method and data from a 14‐year period (2003–16), the annual incidence of and mortality from epidermal necrolysis were estimated to be 6·5 (95% confidence interval 4·1–8·9) and 0·9 (0·1–1·8) cases per million French inhabitants, respectively. Such estimations could be helpful in establishing appropriate healthcare plans, in particular the need for specialized care units.

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Section: What Does This Study Add?mentioning

confidence: 99%

Section: What Does This Study Add?mentioning

confidence: 99%

Section: What Does This Study Add?mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Incidence of and mortality from epidermal necrolysis (Stevens–Johnson syndrome/toxic epidermal necrolysis) in France during 2003–16: a four‐source capture–recapture estimate

et al. 2019

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Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis—Coordinating Research Priorities to Move the Field Forward

2022

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Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN) is the most life-threatening disease managed by dermatologists. Although SJS/TEN only affects 1 to 5 people per million per year, mortality remains stable at 15%, and to our knowledge, highlevel evidence-based treatment options are lacking. The SJS/TEN meeting 1,2 that was held virtually August 28 and 29, 2021, brought together multidisciplinary clinicians, scientists, and community members to share knowledge, research, stories, and support. In this Viewpoint, we provide our perspective of the successes and gaps in research and clinical care of SJS/TEN that were highlighted at this meeting and propose future opportunities for prioritization and optimization. Historical Perspective of SJS/TENIn 1922, Stevens and Johnson 3 defined SJS as a syndrome of fever, mucocutaneous lesions, and severe ocular involvement. Although these early cases were assumed to be associated with infection and not drugs, the first reports of frequently fatal bullous dermatitis with mucosal involvement followed the subsequent discovery of phenobarbital, phenytoin, and sulfa antibiotics. In 1956, Lyell 4 proposed the name toxic epidermal necrolysis to unify syndromes characterized histopathologically by epidermal necrosis that clinically showed epidermal detachment. A consensus panel in 1993 considered SJS and TEN to be 1 disease across a spectrum of severity. 5 From the RegiSCAR data, a probable drug cause is identified in 67% of cases of SJS/TEN, possible drug cause in 13%, and unlikely or unidentifiable drug cause in 13%. 1

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Systemic interventions for treatment of Stevens-Johnson syndrome (SJS), toxic epidermal necrolysis (TEN), and SJS/TEN overlap syndrome

Jacobsen

Olabi

Langley

et al. 2022

Cochrane Database of Systematic Reviews

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SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation

Cited by 149 publications

References 202 publications

Incidence of and mortality from epidermal necrolysis (Stevens–Johnson syndrome/toxic epidermal necrolysis) in France during 2003–16: a four‐source capture–recapture estimate

Incidence of and mortality from epidermal necrolysis (Stevens–Johnson syndrome/toxic epidermal necrolysis) in France during 2003–16: a four‐source capture–recapture estimate

Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis—Coordinating Research Priorities to Move the Field Forward

Systemic interventions for treatment of Stevens-Johnson syndrome (SJS), toxic epidermal necrolysis (TEN), and SJS/TEN overlap syndrome

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