Stevens Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) 2023

点击翻译按钮获取中文摘要

Project Summary Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN) is an immunologically mediated and typically drug-induced disease defined by separation and necrosis of skin and mucosal surfaces. SJS/TEN affects 1-5/million persons/year, and mortality in immunocompromised and elderly adults is up to 50%.1-3 SJS/TEN patients receive multidisciplinary care in the acute setting; however, their community and chronic follow-up care is often fragmented or non-existent. Long-term disabilities affect their vision, mental and general health, and quality of life and may leave them with limited safe future drug options.2-5 Although many research advances have highlighted opportunities for prediction, prevention, earlier diagnosis, and more targeted treatments for SJS/TEN, the relative rareness of the disease has created the need for coordinated multidisciplinary research networks.5, 6 Particular stakeholders include dermatologists, burn and critical care specialists, ophthalmologists, allergists and immunologists, pharmacists, pharmacologists, mental health specialists and informaticians. Such multidisciplinary networking between researchers and a community of SJS survivors and their families has been integral to the success of previous SJS/TEN meetings held in 2017, 2019, and 2021. The meeting “Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis 2023” planned to occur virtually August 26-27, 2023 (also SJS Awareness Month), will build off the success of our past SJS/TEN meetings in 2017, 2019, and 2021.2-5 To ensure the success of SJS/TEN 2023, our program highlights will include community engagement, patient focus, and disparities in science and care. Like the 2021 meeting, the 2023 meeting will be held virtually due to ongoing global inequality in vaccines and safe travel access during the COVID-19 pandemic. The scientific content of SJS/TEN 2023 will center around priorities identified in the 2021 meeting. These include 1) Prevention, prediction, and regulation; 2) Earlier diagnosis, risk stratification and identification of the culprit drug; 3) Evidence-based short-term care and follow-up; and 4) Understanding mechanisms and promoting innovation in care. Our outcomes will address concerns across diverse constituencies of patients through broad community engagement throughout the program as well as dedicated community and patient-focused sessions. Other products include expansion of the diversity of the engaged scientific and community groups. In addition, we will build and measure the growth of multidisciplinary networks leading to grant funding, publications, career development of new investigators, innovation, implementation, and ongoing engagement with the SJS community. This meeting aligns with the broad mission of the NIH and National Institute of Arthritis and Musculoskeletal and Skin disease to encourage treatment, prevention, and research progress, research training of basic and clinical scientists, and community engagement.