In order to address the current lack of outcome measures, we developed iscorEB-instrument for scoring clinical outcomes of research for Epidermolysis Bullosa–that quantifies the disease severity from both, clinician and patient/family perspective. The paper version of the tool was developed into a mobile application for multiple digital platforms. iscorEB can be used for research purposes or in regular clinical practice to monitor disease progression. Patients can use the patient only sub score by themselves to monitor changes over time.