title: Oral health care for patients with epidermolysis bullosa--best clinical practice guidelines.
abstract: OBJECTIVE
  To provide the users with information on the current best practices for managing the oral health care of people living with EB.
  
  
  METHODS
  A systematic literature search, in which the main topic is dental care in patients with Epidermolysis Bullosa, was performed. Consulted sources, ranging from 1970 to 2010, included MEDLINE, EMBASE, CINAHL, The Cochrane Library, DARE, and the Cochrane controlled trials register (CENTRAL). In order to formulate the recommendations of the selected studies the SIGN system was used. The first draft was analysed and discussed by clinical experts, methodologists and patients representatives on a two days consensus meeting. The resulting document went through an external review process by a panel of experts, other health care professionals, patient representatives and lay reviewers. The final document was piloted in three different centres in United Kingdom, Czech Republic and Argentina.
  
  
  RESULTS
  The guideline is composed of 93 recommendations divided into 3 main areas: 1) Oral Care--access issues, early referral, preventative strategies, management of microstomia, prescriptions and review appointments 2) Dental treatment: general treatment modifications, radiographs, restorations, endodontics, oral rehabilitation, periodontal treatment, oral surgery and orthodontics, and 3) Anaesthetic management of dental treatment.
  
  
  CONCLUSIONS
  A preventive protocol is today's dental management approach of choice.
authors.affiliation: Department of Paediatric Dentistry, Facultad de Odontología, Universidad de Chile, Santiago, Chile. skramer@u.uchile.cl
authors.forename: Susanne M
authors.initials: SM
authors.lastname: Krämer
authors.forename: María Concepción
authors.initials: MC
authors.lastname: Serrano
authors.forename: Gisela
authors.initials: G
authors.lastname: Zillmann
authors.forename: Pablo
authors.initials: P
authors.lastname: Gálvez
authors.forename: Ignacio
authors.initials: I
authors.lastname: Araya
authors.forename: Nicolás
authors.initials: N
authors.lastname: Yanine
authors.forename: Alonso
authors.initials: A
authors.lastname: Carrasco-Labra
authors.forename: Patricio
authors.initials: P
authors.lastname: Oliva
authors.forename: Romina
authors.initials: R
authors.lastname: Brignardello-Petersen
authors.forename: Julio
authors.initials: J
authors.lastname: Villanueva
mesh_terms: D000766:Anesthesia, Dental; D003190:Comprehensive Dental Care; D017742:Dental Care for Chronically Ill; D004820:Epidermolysis Bullosa / Q000150:complications* / Q000517:prevention & control; D006267:Health Education, Dental; D006297:Health Services Accessibility; D006801:Humans; D009059:Mouth Diseases / Q000517:prevention & control; D009910:Oral Hygiene; D019647:Oral Surgical Procedures; D012017:Referral and Consultation; D014076:Tooth Diseases / Q000517:prevention & control; D014099:Toothbrushing