Principal Investigator:
Kimberly Morel, MD – Columbia University
Overview:
Patients with epidermolysis bullosa (EB) require daily care of chronic wounds that are at risk for colonization by various bacterial organisms. A subset of patients is at risk for squamous cell carcinoma (SCC) and certain bacterial-host interactions have been implicated. Given the rarity of EB, multicenter involvement is necessary to generate optimal data-driven wound care recommendations. The EB Clinical Characterization and Outcomes Database (EBCCOD) serves as a repository of information from EB patients across 19 participating centers in the United States and Canada. Using this resource, we are characterizing EB patients’ home skin care routines and to analyze wound culture results from EB patients on a multicenter scale (including mupirocin susceptibilities). A secondary aim is to gather pilot data to better understand the relationship between wound culture results, chronicity of wounds and SCC risk.
This study is a retrospective analysis on data from more than 800 patients pertaining to skin care practices and clinical features.
Status:
Analyzing data.