Best Clinical Practice Guidelines In Dental Care In Eb

Susanne Kramer, Dentist

EB is a rare disease with multiple oral manifestations, which require a special approach from the dental point of view.  Due to its low prevalence, most of the dentists don't know about the disease. The scientific literature is scarce, making it difficult for dentists with no experience on EB to know how to approach a patient with EB in a safe manner with all the special care this group of patients need.

To develop the "Best Clinical Practice Guidelines Dental Care for Patients with Epidermolysis Bullosa" a group of health care professionals with vast experience in EB was gathered. It became necessary to gather experts from different centres around the world to discuss about the different treatment alternatives. A standard methodology based on a systematic review of the evidence was followed.


The aim of the guideline is to provide the users with information on the special cares people with EB require before, during and after dental treatment. These guidelines can be applied to all patients diagnosed with Epidermolysis Bullosa. As such, the guideline considers information for all four major types of EB: EB Simplex, Junctional EB, Dystrophic EB and Kindler Syndrome. The users are expected to be Specialists in Paediatric Dentistry, Special Care Dentistry, Orthodontics, Oral and Maxillofacial Surgery, Rehabilitation and General Dental Practitioners, Dental hygienists, Paediatricians, Dermatologists, Dietitians, parents and those living with Inherited Epidermolysis Bullosa.

These guidelines contain a chapter on general information on dental care of patients with EB, followed by a chapter explaining the precautions that should be taken into account when treating patients with each subtype of EB, as well as recommendations for dental treatment. The appendix includes a glossary, general information on EB, a description of its oral manifestations and an information sheet with oral exercises.

More information about the guidelines

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