Heterogeneity of Reported Outcomes in Epidermolysis Bullosa Clinical Research: A Scoping Review as a First Step Towards Outcome Harmonisation.

Eva W H KorteTobias WelponerJan KottnerSjoukje van der WerfPeter C van den AkkerBarbara HorváthDimitra KiritsiMartin LaimerAnna M G PasmooijVerena WallyMaria C Bolling

Published in: The British journal of dermatology (2023)

We demonstrate substantial heterogeneity in reported outcomes and outcome measurement instruments in EB clinical research over the past 30 years. This review is the first step towards harmonisation of outcomes in EB, which is crucial to expedite clinical translation of novel treatments for EB patients.

Keyphrases

ejection fraction
single cell
newly diagnosed
type diabetes
prognostic factors
glycemic control