Take part in an international research study on burden and resources in EB - online survey

Updated: Aug 13, 2021

Take the survey in English: https://survey.sfu.ac.at/EB2021/?q=E_Qnr

Take the online survey in German: https://survey.sfu.ac.at/EB2021/?q=D_Qnr

Since summer 2019, Dr Gudrun Salamon, researcher in the faculty of psychology at the Sigmund Freud University Vienna has been leading a research team of six people on the project of "Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa".

In cooperation with DEBRA International, DEBRA Austria, and the EB-Haus Austria, the team are currently conducting an online survey on burdens and resources in EB with the international EB population (in German and English).

Your participation and your valuable experience will help the team to build a better 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.

What is the focus of the study?

Apart from the medical aspects, quality of life is a crucial factor in the well-being of those living with a chronic condition, such as EB. The balance between individual burdens and resources is essential. In the study, a special focus is placed on what was or still is perceived as helpful assuming that EB does not only have an impact on those affected themselves, but also on their relatives.

Who can take part in the survey?

if you have EB yourself, or
if you are a close relative of someone who has EB (or who you have lost to EB), e.g. your partner, child, sibling, parent, or another close relative.