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Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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Asking people living with EB what they want from research

A recent study published in Orphanet Journal of Rare Diseases (OJRD) attempts to understand the research issues that are important to patients people suffering from dystrophic epidermolysis bullosa (DEB) and their clinicians, in order to prioritise the research efforts.

Although there are many unanswered clinical questions in DEB, funds are limited and hence it is crucial to prioritise research efforts. To estimate which questions need immediate attention, Davila-Seijo et al., followed the methodology of James Lind Alliance in the UK which helps in "identifying and prioritizing for research the treatment uncertainties which patients, carers and clinicians agree are the most important".

This study found that research on solving everyday problems of DEB patients was given precedence over finding novel therapies to treat the disease. The priority areas of research, in decreasing order of importance, included wound care, itch and pain management, neoplasms, syndactyly and finally, researching novel treatments.

The authors feel that the success that they achieved in this study showed that this methodology can be used for prioritising research in other rare diseases as well.

Our colleagues in DEBRA Spain were centrally involved in this study and we congratulate them on their very valuable work.

Barbara Dissauer, DEBRA Austria

Mosaik of 2 images: workshop group and page with results

A workshop where participants could discuss research priorities played a major part in the study