DEBRA International is undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB and is one of the few patient organisations in the world leading such initiative.
CPGs are guidelines which provide recommendations for clinical care. They are based on evidence gained from medical science and, when no evidence exists, on expert opinion. The CPGs help patients understand available treatment options and empower patients to have informed consent to work in partnership with their clinicians in developing their own clinical plan. For healthcare professionals, the CPGs are useful in recommending treatment for specific conditions based on generally recognised standard parameters, as well as help review treatment benefits and possible harms with their patient.
Where patient numbers are considered small, such as the case for rare diseases like EB, CPGs are vital in providing internationally consistent standards of care. The CPGs also highlight situations where there is a lack of evidence, which identifies gaps in knowledge of the condition and could shape future research. These guidelines will help to improve the clinical and social care of EB patients across the globe. Until there is a cure, there is probably no greater way to positively impact the lives of people with EB.
DEBRA Australia is proud to share these CPGs with you and help disseminate the knowledge about management of EB to both health professionals and families living with EB. Because the EB CPGs are patient driven, the topics are chosen based on priorities set by the EB community. Many Australian experts have been involved in developing these guidelines as these are a truly global effort. Below is the list of the main CPGs we wish to share with you, any many more are currently being developed:
- Skin and Wound Care
- Psychosocial Care
- Pain Management
- Cancer Management
- Occupational Therapy
- Laboratory Diagnosis
- Oral Healthcare
These clinical guidelines are for patients as well as healthcare professionals. If however, you are looking for advice that is more focused on daily life with EB, we recommend that you have a look at the EB Handbook https://www.eb-haus.org/en/eb-handbook/
To learn more about CPGs’ please read the CPG fact sheet or visit http://www.debra-international.org/clinical-guidelines.html