Parents’ understanding of current and future treatments for CF
Research type
Research Study
Full title
Parents’ understanding of current and future treatments for CF and implications for their child’s future
IRAS ID
125255
Contact name
Sheena Parmar
Contact email
Research summary
CF is a genetic disease characterised by abnormal transport of chloride and sodium in the cell. CF is caused by a mutation in the gene for the protein cystic fibrosis transmembrane conductance regulator (CFTR). Several different mutations may cause CF, and these are usually grouped into different classes. In recent years a new treatment for cystic fibrosis has been developed which is starting to be prescribed this year. It is the first of a new generation of treatments that addresses the underlying problem in the cell which causes CF. It targets one type of mutation class, however, which is present in only 4% of the CF population. At the moment the equivalent drug is not available for the other mutation classes though they may follow in the future. Therefore the new treatment will not work for all CF patients. With this in mind, it is likely that awareness of the genetics of CF and mutation class will become more important for parents and patients in the future. This research is interested in exploring these topics from the perspective of mothers of young children with CF. The research aims to gain an understanding about how much mothers of children aged five or younger with CF know about the genetics of CF in general, and in relation to their child in particular.
Furthermore, it is also interested in exploring the mothers’ views and beliefs about current treatments for CF and how this influences their perception of what their child’s future looks like. The research aims to see whether knowledge of the new treatment has changed the mothers’ beliefs about the condition, the importance of adherence and their child’s future.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
13/YH/0199
Date of REC Opinion
5 Aug 2013
REC opinion
Further Information Favourable Opinion