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31.03.2014

Five things you need to know about EB clinical practice guidelines

DEBRA International is very focused on the development of clinical practice guidelines for EB but what are they and how do they help? Here are five things you should know about them.

  1. Clinical practice guidelines do just as the name suggests - they guide clinicians (doctors, nurses, dentists, physiotherapists etc.) in their decision-making, as they care for people with EB.
  2. Each EB guideline will contain recommendations for the best path to choose, when faced with a particular clinical challenge. The ideal scenario is for these recommendations to be based on scientific evidence, i.e. where different possible actions have been tested scientifically. Failing that, the expert opinion of clinicians working in the field is drawn upon.
  3. Clinical practice guidelines are not just for clinicians. With a condition as rare as complex as EB, patients become the true experts in their own condition. Clinical practice guidelines therefore, are also for patients who wish to understand more about their own medical care.
  4. Developing a guideline for a condition as rare as EB can be very challenging. For most clinical questions, the different possible courses of action have simply not been tested in a rigorous, scientific manner. Those developing the guidelines therefore, rely on expert opinion but even that can be limited on some topics. That said, the guidelines represent a vast improvement on a scenario where each clinician has to figure it all out for themselves.
  5. One clinical expert will take the lead in developing each EB guideline but they don't do it alone. They work with a panel of clinical experts and also patients, who will assess the guideline to make sure that it makes sense in the reality of life for an EB patient.
Collage of a photo of 2 doctors holding folders, and the covers of 3 clinical practice guidelines for EB