Clinical Practice Guidelines

What are clinical practice guidelines and why are they relevant?

DEBRA International is driving the creation of a series of clinical practice guidelines (CPGs) for EB. These guidelines will help improve the medical care of EB patients across the globe and DEBRA Ireland is very proud to be playing a central role in this process. See here for a 2016 report on the initiative: debra-clinical-practice-guideline-initiative_report

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 supporting their 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 clinical care 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 have been completed for oral health care and wound care.  Guidelines for pain management, skin cancer and nutrition are currently in development. A number of other guidelines are also in the planning phases.
As soon as they are completed, each of the guidelines is made available here, on the DEBRA International website.

What’s involved in developing a CPG?

The process of generating a CPG is a very challenging and laborious one. Briefly, however, it requires the following phases and tasks:
1. The appointment of a clinician to lead the process and the assembly of an expert group
2. The identification of key clinical questions and the preparation of a plan for guideline development.
3. The undertaking of an in-depth search and systematic appraisal of the relevant scientific literature.
4. The gathering of expert opinion and the development of consensus-based recommendations, where the scientific evidence base is weak.
5. The drawing up of draft guidelines, based on evidence which is graded, according to strength.
6. The consultation with patients and the wider medical community on the draft guidelines.
7. The dissemination of the final guidelines.
8. Regular evaluation and revision of the guidelines.