• 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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For people living with EB

Guidelines are not just for clinical experts but for you too. They provide a series of care recommendations in a particular clinical area. We need people living with EB (those with EB, parents or carers) to get involved in their development.

What are CPGs?

CPGs are designed to support and improve decision-making in patient care. They guide:

  • Clinical staff and social services professionals as they care for people with EB
  • People living with EB as they participate in their own care

Why do we need them?

CPGs are designed to help ensure that clinical care is guided by evidence gained from medical science (often referred to as evidence-based practice) and, when no evidence exists, by expert opinion. Taking the CPGs to your healthcare providers is a valuable way of ensuring your care is based on the latest evidence-based practice for EB. In the future we hope to provide patient versions of EB guidelines but, in the meantime, the published guidelines are for you too.

How are they developed?

Guidelines are developed by assembling an international panel of clinical experts and patients. This panel then:

  • Agrees on the focus for the guideline
  • Searches for evidence from research studies, to guide recommendations for care
  • Draws on the expert opinion within the panel when no evidence exists
  • Drafts recommendations for care
  • Has these recommendations reviewed by other experts and patients
  • Publishes the guideline for all to use
  • Updates the guideline when substantial new evidence or changes in practice emerge

We’ve made it sound easy here but developing a guideline is not an easy task. It takes a huge amount of work and at least 2 years to develop a guideline to the best standards.