We are writing to inform you about a research study, BUR-EB, which is being conducted in seven European countries, including Spain. The study has been reviewed and approved by the Medication Research Ethics Committee of the Canary Islands University Hospital Complex .
The aim of the qualitative BUR-EB study is to co-create patient journey maps that illustrate the experience of affected people and informational materials for self-management. The materials will be translated and disseminated to the international epidermolysis bullosa community. To do this, a group of affected people and their caregivers, including you, have been selected to ask for your collaboration in this study.
The collaboration we are asking for is very simple, we ask you to participate through two/three online workshops followed by specific contacts via email or social networks with whom we want to collect information about your experience with the disease and self-care and we will jointly develop information materials for self-care. The workshops will not last more than two hours.
Your participation in this study is entirely voluntary and will not change the usual form of health care. The results will be completely anonymous and at no time will it be possible to link your responses with personal or medical history data. 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 April 27, 2016 of Data Protection (GDPR).  In accordance with the provisions of the aforementioned legislation, you may exercise your rights of access, rectification, cancellation and opposition of data (ARCO rights), for which you should contact the study coordinator.
If you have any questions, please contact Ana Toledo Chávarri (e-mail: anatoledochavarri@sescs.es) at the Fundación Canaria de Investigación Sanitaria de Canarias (FIISC). You can also visit the project website: www.bur-eb.com.

Help us to learn about experiences and improve epidermolysis bullosa self-care!