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  1. Data were obtained from 3271 patients consecutively enrolled in the National Epidermolysis Bullosa Registry from January 1, 1986, through December 31, 2002, using a detailed instrument created with the assistance of the National Institutes of Health. Analyses were performed in January 1999 and April 2015.

  2. 11 sty 2024 · Epidermolysis bullosa (EB) defines a prototypic group of rare, inherited dermatoses, characteristically featuring skin fragility secondary to structural defects in the dermo-epidermal junction. This skin fragility creates an impaired tolerance to mechanical stress.

  3. 1 lis 2016 · Pertinent to this report, estimates were made of the incidence and prevalence during 2 time frames. Results: During the first 5 years of funding of the registry, the overall incidence and prevalence of inherited EB were 19.60 and 8.22 per 1 million live births, respectively.

  4. Epidermolysis bullosa (EB) is a genetically heterogenous group of rare disorders that causes mechanical fragility and blistering of the skin and in some cases the epithelial lining of other organs, in response to minimal or no apparent trauma. 1 EB affects approximately 1 in 17,000 live births, with 500,000 cases estimated worldwide. 2 EB can ...

  5. 24 wrz 2020 · Epidermolysis bullosa (EB) is an inherited, heterogeneous group of rare genetic dermatoses characterized by mucocutaneous fragility and blister formation, inducible by often minimal trauma.

  6. 15 lip 2022 · Patients with a diagnosis of epidermolysis bullosa (EB) or their caregivers completed a one-time online survey administered by EBCare, an international online EB registry. Survey data from respondents self-reporting a diagnosis of EBS were analyzed for clinical and wound manifestations, medication use, and QOL (using Quality of Life in ...

  7. 3 sty 2020 · The National Epidermolysis Bullosa Registry estimated that the overall prevalence of epidermolysis bullosa in the United States is 11.1 per one million live births, with an incidence of 1 in every 51,000 live births .