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Epidemiology of inherited epidermolysis bullosa in Germany.

Cristina HasMoritz HessWaltraud AnemüllerUlrike Blume-PeytaviSteffen EmmertRegina Fölster-HolstJorge FrankKathrin GiehlClaudia GüntherJohanna HammersenKathrin HillmannBettina HöfleinPeter H HoegerAlrun HotzThuy Anh MaiVinzenz OjiHolm SchneiderKira SüßmuthIliana Tantcheva-PóorFrederieke ThielkingBirgit ZirnJudith FischerAntonia Reimer
Published in: Journal of the European Academy of Dermatology and Venereology : JEADV (2022)
Altogether, there are at least 2000 patients with EB in the German population. These results should support national policies and pharmaceutical companies in decision-making, allow more precise planning of drug development and clinical trials, and aid patient advocacy groups in their effort to improve quality of life of people with this orphan disease.
Keyphrases
  • decision making
  • clinical trial
  • public health
  • case report
  • quality improvement
  • risk factors
  • phase ii
  • open label
  • randomized controlled trial
  • study protocol