Novel insights into the epidemiology of epidermolysis bullosa (EB) from the Dutch EB Registry: EB more common than previously assumed?

Rosalie Baardman V K Yenamandra José C Duipmans Anna Maria Gerdina Pasmooij Marcel F Jonkman Peter C van den Akker Marieke C Bolling

Published in: Journal of the European Academy of Dermatology and Venereology : JEADV (2020)

The epidemiological outcomes of EB in the Netherlands are high, attributed to a high detection rate in a well-organized set-up, indicating that EB might be more common than previously assumed. These epidemiological data help to understand the extensive need for (specialized) medical care of EB-patients and is invaluable for the design and execution of therapeutic trials. This study emphasizes the importance of thorough reporting systems and registries worldwide.

Keyphrases

end stage renal disease
newly diagnosed
chronic kidney disease
palliative care
type diabetes
emergency department
peritoneal dialysis
risk factors
electronic health record
big data
skeletal muscle
insulin resistance
drug induced
sensitive detection