ocular_SJS/TEN_Aug2025
Description
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.
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Institutions
- University of North Carolina at Chapel Hill