"CHANGE IN THE SOCIO-ECONOMIC BURDEN OF EPIDERMOLYSIS BULLOSA IN EUROPE (BUR-EB)" This is a study aimed at people with this rare skin condition, of all ages, and their families, involving the hospital and other referral centers in seven European countries.
The participating countries are Austria, Bulgaria, France, Germany, Italy, Spain and Hungary. Please do not participate in the study unless you are from one of these countries.
The BUR-EB survey will assess patients’ quality of life and the burden of the disease on their families, as well as their access to and satisfaction with social and healthcare services. The same survey will also evaluate the economic burden of EB, including the costs of healthcare and informal care, the financial impact on families and productivity losses.
Finally, the data obtained will be compared to findings collected 10 years ago in a similar European study on rare diseases including EB, the BURQOL-RD study
Your participation in this study is entirely voluntary. The survey is completely anonymous and at no time can the answers be related to personal data or medical history. Filling out the questionnaire will take no more than 20 minutes. It is important that you answer all the questions.
There are two surveys: one for the socio-economic impact of Epidermolysis Bullosa (EB): children with EB up to 17 years of age and their informal carers, and one for adults 18+ years old.
Complete the under 17s survey here:
Complete the adults survey here:
The processing, communication and transfer of personal data is in accordance with the provisions of EU legislation on personal data, specifically Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on Data Protection (GDPR). For more, please see the BUR-EB website.