The oral health of people living with Epidermolysis bullosa(EB)V1
Research type
Research Study
Full title
Oral Health Status , oral health behaviours and oral health related quality of life (OHQoL) of people living with Epidermolysis Bullosa
IRAS ID
126690
Contact name
Blanaid Daly
Contact email
Sponsor organisation
King's College London
Research summary
Epidermolysis bullosa (EB) is a general term used to describe a group of inherited skin disorders in which there is a tendency for the skin and mucous membranes (underlying structures) to blister and break down following a minor injury. It is a rare condition and can involve any part of the body including the mouth. Mouth problems include restricted opening and severe mouth ulcers. People living with EB may be at increased risk of dental disease due to a variety of factors such as restricted diet (reliance on soft high calorie sticky foods) ,dry mouth (caused by medications) , persistent injury to the soft tissues due to blistering, compromised oral hygiene, and reduced manual dexterity. In order to provide dental care that is appropriate to the needs of this group of patients, it is important that the condition of the mouth is fully understood and described. We know little about the dental health and its impact on quality of life of people living with EB .It is this information gap that the proposed study is intended to address. All patients attending EB clinics at St Thomas’ Hospital (GSST) from Sept 2013 until April 2014 will be invited to take part in the study and we aim to recruit at least N=100 patients. Participation will involve completing a questionnaire (10 minutes) and having a dental examination (15-30 minutes).
REC name
London - Harrow Research Ethics Committee
REC reference
13/LO/1282
Date of REC Opinion
16 Oct 2013
REC opinion
Further Information Favourable Opinion