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

史蒂文斯约翰逊综合症/中毒性表皮坏死松解症 (SJS/TEN) 2023

基本信息

批准号：
10682795
负责人：
Elizabeth Phillips
金额：
$ 4.51万
依托单位：
VANDERBILT UNIVERSITY MEDICAL CENTER
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-04-01 至 2025-03-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10682795
关键词：
Acute Address Adult Affect Applications Grants Area Awareness COVID-19 pandemic Caring Chronic Clinical Communities Community Networks Coupled Critical Care Dedications Dermatologist Dermatology Discipline Disease Disparity Early Diagnosis Educational workshop Elderly Ensure Environment Faculty Family Fostering Funding Future Grant Growth Gynecology Health Hypersensitivity Immunocompromised Host Immunologics Immunologist Immunology Individual Inequality Informatics Interdisciplinary Study International Investments Learning Measures Mediating Mental Health Mentorship Mission Modeling Mucous Membrane National Institute of Arthritis, and Musculoskeletal, and Skin Diseases Necrosis Operative Surgical Procedures Ophthalmologist Ophthalmology Oral Outcome Participant Patients Persons Pharmaceutical Preparations Pharmacists Pharmacology Pharmacy facility Prevention Provider Psyche structure Publications Quality of life Rare Diseases Regulation Research Research Personnel Research Training Science Scientist Site Skin Specialist Stevens-Johnson Syndrome Surface Survivors Toxic Epidermal Necrolysis Translations Travel Uncertainty Underrepresented Minority United States National Institutes of Health Vaccines Vision adverse drug reaction career career development community engagement disability disparity reduction drug development evidence base follow-up global health improved innovation meetings member mortality multidisciplinary physical conditioning physically handicapped posters programs risk stratification special interest group success symposium targeted treatment virtual

项目摘要

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.

项目总结