FAQ

Why is this study important? 

Outcomes for children with cystic fibrosis have been getting steadily better over the years. This has accelerated recently. These changes have occurred within a short period of time, and there is much that we now do not understand about disease progression in children with CF and how this differs from children without CF. In order to understand early CF in this new era of improving outcomes, we need to conduct a long-term study in a large number of very young children with CF at different locations and follow them over many years.

What does ENHANCE involve? 

ENHANCE will collect information both on routine outcomes already collected as part of standard care, such as lung function, infections, nutrition etc. but also novel and uncommonly used outcome measures. The patient will undergo several tests on an annual basis from the time of recruitment. We will employ detailed measures of lung health such as lung clearance index (LCI) and CT scans. Abdominal complaints are common in CF – we will measure abdominal symptoms, bowel inflammation, pancreatic status and markers of liver disease. Other aspects of ENHANCE include looking at sweat chloride and mental health outcomes for children who have CF compared to children who don’t have CF.

Where is ENHANCE taking place? 

ENHANCE is a truly international study. Funding for ENHANCE comes predominantly from the US CF Foundation, with co-funding from the UK CF Trust. The 13 clinical sites for ENHANCE are in Ireland and the UK, and we are working with collaborators across the UK and Ireland, Canada, Germany and the Netherlands.

Who is involved? 

ENHANCE involves a team of leading CF specialists, scientists, data experts and representatives of people with CF. The team is lead by Paul McNally (Dublin) and Jane Davies (London), both paediatricians looking after people with CF. The team includes consultants in each of the clinical sites. 

Where do I get more information? 

You can get more information about ENHANCE by asking your CF nurse or consultant. The research team at your centre and one of the CF consultants are involved in the study and have more information. There are information leaflets for parents of children, adolescents and young children.