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DEBRA International calls for Clinical Research and Clinical Trials proposals

DEBRA International has issued a call for proposals from EB clinical researchers for late preclinical research and clinical trials to address the development of promising treatments for all types of EB.

The call is different in that it not only covers therapies that aim to address the underlying causes of EB, but also 'symptom-relief' treatments that, while not aiming to cure, will alleviate the painful and distressing symptoms of EB, and improve quality of life.

This new focus is in response to surveys carried out by DEBRA International and some national member DEBRAs in late 2013 and 2014. People with EB and their families were asked what was important to them, and there was a clear answer: that greater priority be given to research into treatments that would relieve the severe symptoms suffered by people with EB on a daily basis – pain, itch, wound infection, contractures and their consequences.

This response was mirrored as one of the priorities identified by EB clinical researchers in other DEBRA surveys in 2014 too: many clinicians feel that there is little in the way of effective symptom-relief treatment that they can offer to patients that has strong evidence to support its use. Even when there is evidence that a therapeutic concept may work, the route to clinical treatment is long, with many biological and technical challenges remaining.

It is the successes of the five major programme grants funded from the DEBRA International 2012 call for 'Collaborative preclinical research for EB therapies' that has encouraged DEBRA to again fund a call for large-scale programme grants.

Hence, the 2015 call is encouraging proposals for clinical studies (small scale proof-of-principle, through to late preclinical research, and clinical trials) in symptom-relief research, as well as therapies aiming to cure EB.

Clinical research and trials are expensive, and the 2015 call is making available up to €500 000 per proposal – researchers are encouraged where appropriate to match this funding with funds from industry or other charity or government sources. The call also encourages researchers and clinicians to work closely, bringing their own distinct areas of expertise together.

Research has made great progress over the past 10 years, and is starting to deliver some promising ideas for therapy. However, as also identified by researchers and clinicians in DEBRA's 2014 surveys, the number of targets for therapy is still very much limited by our still-limited knowledge of EB: while we may know the genes involved, little is known of the biological mechanisms by which the genetic faults cause disease.

Researchers and clinicians emphasised that, whether looking for new ideas for symptom relief or cures, further basic research into understanding EB must continue alongside clinical trials to test the ideas we already have. For this reason, DEBRA International continues to support research into understanding EB as one of its four priority areas for its 'ordinary' calls for research proposals, which DEBRA normally holds twice each year, in spring and autumn.

Find out more about the DEBRA International funding schemes:

Dr. Clare Robinson, Head of Research, DEBRA International

Timeline (2015) showing the dates of 2 DEBRA International research funding calls

Timeline of DEBRA International research funding calls 2015