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The EBCRC sites enroll patients in the EB Clinical Characterization and Outcomes Database (CCOD). The goals of the CCOD are to:
1) identify well-described patient cohorts that may participate in future studies and therapeutic trials, and
2) gather longitudinal data on the course, complications, and clinical interventions of EB, in order to develop and refine guidelines for best clinical practice.
There are nearly 500 patients enrolled in the CCOD at this time.
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