• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

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

donate now

14.12.2016

Wound Healing in Epidermolysis Bullosa Clinical Research Review and Priority-setting Consensus Meeting


Wound Healing in Epidermolysis Bullosa Clinical Research Review and Priority-setting Consensus Meeting

On the 5th and 6th of December, DEBRA Austria and DEBRA UK jointly supported and organized a 'Wound Healing in EB' roundtable meeting in London.

As a by-invitation event, limited to just 25 people to facilitate useful discussion and exchange of experience, the meeting brought together roughly equal numbers of senior EB clinician-researchers, with worldwide leading experts in other areas of acute- and chronic-wound healing.

This is the first time such a meeting has been held by DEBRA, and the rationale for doing so was to stimulate innovation in EB wound-healing research. The need for increased emphasis on symptom-relief research has been highlighted as essential by both clinicians and people with EB, and this forms one of the strategic priorities of the DEBRA International research strategy for 2015 – 2019.

In structured discussions expertly chaired by Professors Leena Bruckner-Tuderman and Jemma Mellerio, topics covered included consideration of skin and mucosal fragility and blistering in EB compared with other acute and chronic conditions, and the implications for possible treatment targets; the role of inflammation and its management in wound healing; therapy delivery, both topical and systemic; implications of infection on wound healing and strategies for its management, and other complications of EB wounds including pain and itch, and their possible etiology and control.

Multiple aims were set for the meeting, and these were more than achieved: 

·         Evaluation of our current knowledge and challenges in EB wound healing, with input of external perspectives from associated disciplines, helped identify unmet clinical-research priorities in EB wound healing, and targets for research.

·         These priorities are now being used to frame a DEBRA International call for research proposals in EB wound healing for Spring 2017; the scope and criteria for the call will be announced early in the New Year.

·         Enthusiastic feedback from participants since the roundtable has indicated that we have brought EB to the attention of a wider network of wound-healing experts, many of whom are keen to further spread awareness among their own networks of colleagues and contacts. We have also thus widened DEBRA’s net of experts for future input in this area.

·         Some participants are also considering initiating EB wound-healing research themselves, and DEBRA is able to help develop collaborative contacts with the EB research community – if brought to fruition, this will achieve another aim of the meeting, to bring new research perspectives and expert researchers into EB wound-healing research.

With the input of meeting participants, DEBRA intends that the findings of the meeting will be published in the scientific press, to further spread the word of unmet priorities and research opportunities in EB research. It is hoped that a renewed focus on such research will identify step-change possibilities for advancing clinical treatment of wounds.

The success of this meeting has proven the value of the format, and the intention is to repeat the process of bringing selected senior researchers and clinicians who specialize in EB, alongside experts from relevant disciplines, to tackle other challenging aspects of EB research and clinical management.

Dr Clare Robinson, Head of Research, DEBRA International