• 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

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Translating research

Some areas of research which DEBRA International has funded are now at a stage where there is a realistic prospect of developing clinical treatments, and we are considering how best to translate the most promising research to the clinic.

DEBRA International has invested € 3 million annually to support research to this stage, with funds derived solely from donations. Development of a therapy through clinical trials will, however, cost 5-30 times more, the actual cost depending on the type of therapy.

Research translation poses a number of challenges:

  • Selecting which research to develop: with competing technologies and finite financial resources, DEBRA is likely to have to choose to develop one type of therapy over another. Factors such as the number of people likely to benefit, and the severity of the type of EB, will have to be taken into account in consultation with MSAP, TRAP, clinicians and our membership. In practice, therapies selected for development are likely to be those where there is the opportunity to create a safe, effective therapy that is affordable, for any type of EB.
  • Financial: to date, DEBRA has funded research up to the point of early-stage clinical trials (phase I); further development requires much greater funding, and this will require new ways of working, perhaps in partnership with others, notably industry.
  • Expertise: We will need the advice of individuals with experience and expertise in taking research through clinical trials, and regulatory approval, into the clinic. For this reason, DEBRA has set up the Translational Research Advisory Panel (TRAP) to provide the appropriate business, commercial, investment knowledge to help us develop the research as rapidly and cost-effectively as possible. TRAP expertise will complement that of our MSAP (Medical & Scientific Advisory Panel).

EB is a rare condition but presents opportunities for companies with interests in traumatic, burn and congenital-defect wound repair, small-molecule drugs to modify the skin microenvironment and the course of the disease, or the chronic inflammation which predisposes the skin to aggressive cancer.

DEBRA International now seeks synergies with research in other conditions, and new public and private partnerships internationally.

These issues and others are considered in depth in DEBRA's evolving research strategy.

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