ocular_SJS/TEN_Aug2025

Study data were collected and managed using REDCap electronic data capture tools hosted at the University of North Carolina. REDCap (Research Electronic Data Capture) is a secure, web-based software platform designed to support data capture for research studies, providing 1) an intuitive interface for validated data capture; 2) audit trails for tracking data manipulation and export procedures; 3) automated export procedures for seamless data downloads to common statistical packages; and 4) procedures for data integration and interoperability with external sources. Baseline and follow-up patient data include demographics, including age, race, sex, ocular and systemic comorbidities, medication triggers, details related to onset timeline, inpatient hospitalization and acute interventions, long-term outcomes including chronic ocular findings and secondary acute complications as well as follow-up dates, surgery logs include all surgical interventions related to ocular surface reconstruction, lid/mucosal surgeries, and corneal graft-based surgeries, postoperative complications and other therapeutic interventions are also present in the dataset. Secondary complications collected include: dry eye syndrome or keratoconjunctivitis sicca, ocular hypertension or secondary glaucoma, corneal ulceration, perforation, atraumatic globe rupture, phthisis bulbi, or anophthalmos. Acute OSS Grades corresponding to the peak ocular severity during inpatient admission were assigned to each patient based on the documented degree of ocular involvement. Priority in OSS grading is given to the component with the highest severity; for example, a patient with 70% lid margin staining, no corneal defects, and only moderate hyperemia would be classified as very severe ocular involvement. For patients with longitudinal follow-up data, ocular exam findings were collected, organized and compiled according to a scoring system originally proposed by Sotozono et al. In total, there are 144 unique patient record forms collected. Please note, this dataset is part of an ongoing prospective study and therefore, may not reflect the current state of later iterations or modifications.本研究数据由北卡罗来纳大学托管的REDCap（Research Electronic Data Capture，研究电子数据采集系统）电子数据采集工具完成收集与管理。REDCap是一款安全的基于网页的软件平台，专为支持研究数据采集而设计，具备四大核心功能：1） 支持经验证的数据采集的直观交互界面；2） 用于追踪数据操作与导出流程的审计追踪功能；3） 可将数据无缝导出至常见统计软件包的自动化导出流程；4） 支持与外部数据源实现数据整合与互操作的相关流程。 基线与随访阶段的患者数据涵盖多类信息：其一为人口统计学资料，包括年龄、种族、性别、眼部与全身合并症、药物诱因、发病时间线相关细节、住院情况及急性期干预措施；其二为长期结局信息，包括慢性眼部病变、继发性急性并发症，同时包含随访日期。手术日志记录了所有与眼表重建、眼睑/黏膜手术及角膜移植相关的外科干预措施，数据集同时收录了术后并发症与其他治疗干预相关内容。 本次收录的继发性并发症包括：干眼症综合征（或干燥性角结膜炎）、高眼压症或继发性青光眼、角膜溃疡、穿孔、非创伤性眼球破裂、眼球痨或无眼球。 所有患者均根据记录的眼部受累程度，被赋予对应住院期间眼部严重程度峰值的急性眼部严重度评分（Acute OSS Grades）。该评分体系优先以严重程度最高的指标作为分级依据：例如，某患者眼睑缘染色范围达70%、无角膜缺损，仅存在中度充血，则会被归类为极重度眼部受累。 对于具备纵向随访数据的患者，眼部检查结果将按照Sotozono等人最初提出的评分系统进行收集、整理与汇编。本数据集共收录144份独立患者记录表。 请注意，本数据集属于一项正在进行的前瞻性研究的一部分，因此可能无法反映后续版本或修改后的最新状态。