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1. Study information on the research project

„Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa“

Apart from the medical aspects, quality of life is a crucial factor for well-being in chronic diseases such as EB. In this context, the balance between individual burdens and resources is essential. In our study, a special focus is placed on what was or still is perceived as helpful. We assume that EB does not only have an impact on those affected themselves, but also on their relatives. With this study, we would like to build a betterer understanding on burdens and helpful factors in dealing with EB - with the aim of being able to provide better support to people living with EB as well as their relatives​.

So if

- you have EB yourself​ or

- a close relative of yours has EB or has passed away from EB, e.g. your partner, your child, your sister, your brother, your mother, your father or another close relative​:

Thank you for taking the time to participate in this survey​.

It will take approximately 30-40 minutes to answer the questions. Your answers are anonymous and cannot be linked to you personally. Please take your time to complete the questionnaire and answer the questions as honestly as possible. If you feel uncomfortable answering any of the questions, you may choose not to answer them. If you have any further questions, please contact the study director DDr. Gudrun Salamon at any time at


Thank you for your participation and all the best​!

Gudrun Salamon

The study is supported by DEBRA Austria and DEBRA international.

Project team: Nina Dominik, Vinzenz Hübl, Viktoria Kazcor, Elisabeth Schneider, Teresa Schneiderbauer, Sophie Strobl.

DDr. Gudrun SalamonSigmund Freud University, DEBRA Austria, DEBRA International – 2021