• 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

donate now

Clinical Practice Guidelines (CPGs) for EB

Doctors holding folders

DEBRA International is driving the development of a series of clinical practice guidelines (CPGs) for EB. These guidelines will help improve the medical care of EB patients across the globe.

What are CPGs?

CPGs are guidelines that are designed to support and improve decision-making processes in patient care. They guide medical professionals as they care for people with EB and also guide patients in their involvement in their own care. CPGs are designed to help ensure that clinical care is guided by evidence gained from science (often referred to as evidence-based practice/medicine) and by expert opinion.

Why do we need clinical practice guidelines for EB?

In the context of EB, the CPGs will be of value to clinicians who treat large numbers of EB patients, in providing a framework for their decisions and also, will provide much-needed guidance to clinicians who see few EB patients and are not familiar with the particular challenges of EB. They are also of great value to people living with EB, in empowering them to have even greater involvement in their own care.

In addition, the very process of developing CPGs is of value as it forces discussion and sharing around key clinical questions. The completed CPGs will also allow the identification of gaps in current clinical knowledge, which will be valuable in guiding future research.

What stage are we at in the development of CPGs for EB?

The complex nature of EB means that it is necessary to develop CPGs in a number of different clinical areas. Guidelines on oral healthcare and wound care (of which there are two) are complete. There are guidelines currently in development, for pain management, skin cancer and nutrition. We have also prioritised a list of clinical areas for which we want to see guidelines developed and these can be viewed under Developing a guideline for EB.

Once completed, each of the guidelines will be made available here on the DEBRA International website.

For more detail on this project and the processes involved in developing a clinical practice guideline for EB, please also visit the page Developing a guideline for EB.