Profiling trial burden and patients' attitudes to improve clinical research in epidermolysis bullosa.

Christine ProdingerAnja DiemKatherina Ude-SchoderJosefina Piñón-HofbauerSophie KitzmuellerJohann W BauerMartin Laimer

Published in: Orphanet journal of rare diseases (2020)

This study provides additional indications to better determine and address attitudes towards clinical research among EB patients as well as guidance to improve clinical trial protocols for patient centricity.

Keyphrases

clinical trial
end stage renal disease
ejection fraction
newly diagnosed
peritoneal dialysis
mental health
case report
patient reported outcomes
risk factors
phase iii
patient reported