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.

项目概要史蒂文斯-约翰逊综合征和中毒性表皮坏死松解症 (SJS/TEN) 是一种免疫介导的、通常是药物引起的疾病，表现为皮肤和粘膜表面的分离和坏死。每年影响 1-5 万人/百万人，免疫功能低下者和老年人的死亡率高达 50%。1-3 SJS/TEN 患者在急性环境中接受多学科护理；然而，他们的社区和慢性病患者后续护理往往是零散的或不存在的，长期的残疾会影响他们的视力、精神和一般情况。健康和生活质量，并可能使他们未来的安全药物选择有限。2-5 尽管许多研究进展凸显了预测、预防、早期诊断和更有针对性的机会由于 SJS/TEN 的治疗相对罕见，因此需要协调一致多学科研究网络。5, 6 特别利益相关者包括皮肤科医生、烧伤和重症监护医生专家、眼科医生、过敏症专家和免疫学家、药剂师、药理学家、心理健康研究人员和 SJS 社区之间的这种多学科网络。幸存者及其家人对于 2017 年、2019 年举行的 SJS/TEN 会议的成功至关重要，和 2021 年。计划举行“史蒂文斯-约翰逊综合征/中毒性表皮坏死松解症 2023”会议实际上，2023 年 8 月 26 日至 27 日（也是 SJS 意识月）将延续我们过去 SJS/TEN 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、患者关注以及科学和护理方面的差异。与 2021 年会议一样，由于全球在疫苗和安全旅行方面持续存在不平等，2023 年会议将以虚拟方式举行 COVID-19 大流行。SJS/TEN 2023 的科学内容将围绕 2021 年确定的优先事项展开。其中包括 1) 预防、预测和监管；2) 早期诊断、风险分层和预防。识别罪魁祸首； 3) 循证短期护理和随访；以及 4) 了解我们的成果将解决不同方面的关切。通过在整个计划中广泛的社区参与以及专门的其他产品包括扩大参与的多样性。此外，我们将建立和衡量多学科网络的发展。导致拨款、出版物、新研究者的职业发展、创新、实施和本次会议符合 NIH 和 SJS 社区的持续参与。国家关节炎、肌肉骨骼和皮肤疾病研究所鼓励治疗、预防和研究进展、基础和临床科学家的研究培训以及社区参与。