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Stevens-Johnson syndrome is described in the MONDO ontology as a limited form of toxic epidermal necrolysis characterized by destruction and detachment of the skin epithelium and mucous membranes involving less than 10% of the body surface area. No genes are listed for this condition in this packet. Age-of-onset categories are not certified, and the prevalence is listed as unknown.
According to the MONDO definition, the condition is characterized by destruction and detachment of the skin epithelium and mucous membranes involving less than 10% of the body surface area. Further symptoms, phenotype frequencies, and age of onset are not certified in this packet, and experiences vary between individuals.
The packet does not certify a cause or mechanism for this condition. No causative genes are listed and no inheritance pattern is certified, so this description does not establish a genetic cause.
Diagnostic tests and criteria for this condition are not certified in this packet.
No FDA-approved treatments and no foundational therapies are certified in this packet. Management approaches are therefore not described here.
6 trials found
Prognosis is not certified in this packet, which provides no natural history information for this condition.
According to ClinicalTrials.gov records summarized in the packet, active clinical trials are listed for this condition. Examples include NCT04711200, a Phase 1 trial titled "LYell SYndrome MEsenchymal Stromal Cells Treatment", sponsored by Assistance Publique - Hopitaux de Paris, recruiting, with dates from 2024-04-15 to 2027-04-01; NCT07014059, a Phase 2 trial of autologous serum obtained by a closed-circuit collection device, sponsored by Giancarlo Fatobene, active but not recruiting, with dates from 2025-06-20 to 2027-03-01; and NCT06926478, a Phase 1 trial of subconjunctival Humira for Boston keratoprosthesis, sponsored by Massachusetts Eye and Ear Infirmary, not yet recruiting, with dates from 2026-10-01 to 2028-06-01. A trial title does not establish that an intervention is beneficial. The packet lists two patient organizations: the Stevens Johnson Syndrome Foundation and Stevens-Johnson Syndrome Canada.
Data assembled from 5 of 12 sources · Last updated Nov 4, 2026, 8:45 AM UTC
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Online Mendelian Inheritance in Man
European rare disease database
Genetic and Rare Diseases Info Center
Common questions about Stevens-Johnson syndrome
AI-curated news mentioning Stevens-Johnson syndrome
Updated Oct 15, 2026
Recent research highlights chronic respiratory complications associated with Stevens-Johnson syndrome and toxic epidermal necrolysis. This study underscores the need for ongoing monitoring and management of respiratory health in affected patients.
A case report details the management of lamotrigine-associated Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) overlap during valproate co-therapy using rhTNFR-Fc and therapeutic plasma exchange. This highlights potential treatment strategies for severe drug reactions.
A five-year study at a tertiary referral hospital in Somalia provides insights into Stevens-Johnson syndrome and toxic epidermal necrolysis. The research highlights patient demographics, treatment outcomes, and potential triggers for these severe skin conditions.