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QOLEB


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개발자: Tullie Murrell
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The Quality Of Life in Epidermolysis Bullosa (QOLEB) is a Quality of life questionnaire specifically designed for people with Epidermolysis Bullosa (EB). EB is a rare genetic skin and mucous membrane disorder that causes blistering, wounds and scarring after minor trauma, significantly affecting quality of life.nnThe QOLEB can be used to identify every day life occurrences negatively affected by EB which can then be focused on as areas to improve. It also assesses change in quality of life over time, an important measure when assessing the success of new treatments for EB.nnThe QOLEB was developed by Professor Dedee Murrell and her team of students and fellows at the St George Hospital, University of New South Wales, in Sydney, Australia. The paper-based version was published in the British Journal of Dermatology in 2009. This free mobile-based application was developed to improve the availability and accessibility of the QOLEB for the use by patients and clinicians around the world.