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What is Epidermolysis Bullosa?

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Epidermolysis bullosa (EB) is a family of rare genetic blistering skin disorders characterized by fragility of skin and mucosa. While EB is often viewed as a “skin disease,” it effectively involves the entire body. Affected patients, particularly those with severe sub-types, can suffer from non-skin complications such as growth failure, low blood counts, feeding difficulties, heart and renal disease, and/or osteoporosis. EB decreases quality of life, and in many cases, shortens life expectancy. Current treatment aims to promote patient well-being by helping with wound healing and monitoring and treating secondary complications. 

While there is cure, in the near future, EB treatment may significantly change as a result of clinical trials attempting a cure (such as stem cell transplantation, gene therapy, and protein replacement) or applied therapies based on better understanding of the disease (such as advanced wound care dressings and artificial skin substitutes).

In order to assess the benefits and adverse impacts of such interventions, well-developed, validated measures of clinically relevant and patient-important outcomes are required.

What is iscorEB?

In order to address the current lack of outcome measures, we developed iscorEB (instrument for Scoring Clinical Outcomes for Research of 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 both Google and Apple digital platforms.

iscorEB can be used for research purposes or in regular clinical practice to monitor disease progression. Patients can use the patient only subscore by themselves to monitor changes over time.

The app  is now available free of charge from the iTunes Store.
An Android version is in the works.