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Expertise sharing meeting improves EB care

Expertise sharing meeting improves EB care

The meeting, organised by DEBRA, brought together experts working across different disciplines such as pain management and burn care, to share knowledge about the development of wounds and how they can be treated effectively.

The event established that are many opportunities for greater sharing of basic science and clinical management across specialties which could improve quality of life for people with EB. For example, research into wounds caused by burns has developed exciting new technologies for sophisticated skin grafting which could potentially be applied in EB wound care.

It was also accepted that, while scientific studies use rigorous definitions of wound healing,  these may not always be appropriate and there needs to be collaboration between people with EB, clinicians and regulators to create a meaningful definition of what ‘success’ is when treating a wound in EB.

As a result of the meeting, several research priorities were identified:

  • developing a better understanding of the causes and consequences of non-healing or chronic wounds with the ultimate goal of improving treatments for wound healing
  • clinical studies or clinical trials of therapies to improve wound healing in any type of EB
  • symptom-relief treatments that address the impact of wounds on quality of life, particularly weeping wounds, wound odours, perpetual itching and pain due to wounds or dressing changes, scarring and contractures

DEBRA is committed to funding research which addresses these needs and has issued a call for research proposals. Applications for funding have been received from researchers across the world. All applications are currently being assessed by peer review. Learn more about the process here.

Finding a cure for EB remains a long-term goal, but until that is achieved, pooling expertise across disciplines will facilitate more rapid improvements in wound care for people with EB.

Read the full report of the meeting here.

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