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

• 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
• 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

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.

项目摘要 史蒂文斯 - 约翰逊综合症和有毒表皮坏死溶解（SJS/10）是一种免疫学介导的， 通常，药物诱导的疾病是由皮肤和粘膜表面分离和坏死所定义的。 SJS/十 影响1-5/百万的人/年，并且在免疫功能低下的成年人中的死亡率高达50％.1-3 SJS/10名患者在急性环境中获得多学科护理；但是，他们的社区和慢性 后续护理通常是分散的或不存在的。长期疾病会影响他们的愿景，精神和一般性 健康和生活质量，可能会给他们带来有限的安全未来药物选择。2-5尽管许多研究 进步强调了预测，预防，较早诊断和更多针对性的机会 SJS/10的治疗方法，该疾病的相对稀有性创造了对协调的需求 多学科研究网络。5，6个特定的利益相关者包括皮肤科医生，烧伤和重症监护 专家，眼科医生，过敏症医生和免疫学家，药剂师，药理学家，心理健康 专家和信息分解。研究人员与SJS社区之间的这种多学科网络 幸存者及其家人一直是2017年2017年SJS/10会议的成功不可或缺的一部分 和2021。 几乎是2023年8月26日至27日（也是SJS意识月），将建立我们过去的SJS/TET的成功 2017年，2019年和2021.2-5的会议为了确保SJS/TEN 2023的成功，我们的计划重点将 包括社区参与，患者的重点以及科学和护理方面的差异。像2021会议一样 2023年的会议实际上是由于疫苗的全球不平等和安全旅行的持续不平等。 2019冠状病毒病大流行。 SJS/TET 2023的科学内容将围绕2021年确定的优先事项。 会议。其中包括1）预防，预测和监管； 2）早期诊断，风险分层和 罪魁祸首的鉴定； 3）基于证据的短期护理和随访； 4）理解 机制和促进护理创新。我们的成果将解决潜水员的关注 整个计划中的整个社区参与的患者的选区以及专用 社区和以患者为中心的会议。其他产品包括扩大参与的多样性 科学和社区团体。此外，我们将建立和衡量多学科网络的增长 导致授予资金，出版物，新调查人员的职业发展，创新，实施以及 与SJS社区的持续互动。这次会议符合NIH的广泛使命和 国家关节炎和肌肉骨骼和皮肤病研究所，以鼓励治疗，预防和 研究进度，基础和临床科学家的研究培训以及社区参与。