• 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 EB professionals

Guidelines support and improve decision-making in EB patient care. We strive to apply current best-clinical practice to the development of EB guidelines and need clinical experts to get involved in their development. Understanding the CPG development process helps to ensure their future implementation.

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 and, when no evidence exists, by expert opinion. In a condition as complex as EB, where approaches to care differ greatly, CPGs provide a very useful framework for clinical decision making. They also empower people living with EB to have greater involvement in their own care. CPGs also help to identify gaps in the evidence base, which is valuable in guiding future EB research.

How are they developed?

We strive to apply best practice to the development of EB guidelines and it is essential that a rigorous methodology is applied to the process. Broadly, guidelines are developed by assembling an international multidisciplinary panel of relevant clinical experts and patients.

This panel then:

  • Agrees on the clinical question(s) the guideline should address
  • Undertakes a systematic literature search for relevant evidence
  • 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 in an open access journal
  • Updates the guideline when substantial new evidence or changes in practice emerge

We have developed the DEBRA Guideline Development Standard as a guide to the process.DEBRA International provides support for guideline development primarily through an EB CPG coordinator (Dr. Kattya Mayre-Chilton) and through funding, when possible.