Understand-CF
Research type
Research Study
Full title
An observational study to UNDERSTAND the fitness, body composition, physical activity and sleep patterns in people with Cystic Fibrosis on cystic fibrosis transmembrane conductance regulator modulator therapy compared to healthy controls.
IRAS ID
313567
Contact name
Zoe Saynor
Contact email
Sponsor organisation
University of Portsmouth
Duration of Study in the UK
1 years, 6 months, 0 days
Research summary
Cystic fibrosis (CF) is the UK’s most common inherited genetic condition and affects more than 10,500 people. The disease causes problems with the movement of salt and water in the body, resulting in sticky mucus building up, mostly in the lungs and gut. Thick mucus in the airways leads to repeated infections which, over time, damage the lungs.
Exercise is important for people with CF because it is linked to living longer and reduces the frequency of stays in hospital. However, research has shown people with CF present with several factors that can reduce fitness, including changes to their heart, blood vessels and the amount of muscle and fat a person has.
New medicine (modulators) have recently become available for many people with CF, bringing dramatic improvements in their health. However, we do not know how this medicine alters the physiology in people with CF. Therefore, we want to see if fitness, the amount of fat and muscle a person has, physical activity and sleep is different in people with CF taking this new medicine compared to a healthy control group.We will study 50 people with CF who are taking the new medicine called Kaftrio® and 50 healthy control participants (≥ 10 years old). We will ask them to visit us at the University of Portsmouth on 2 occasions equating to around 4.5 hours in the laboratory. We will ask them to undergo a couple of tests to look how their blood vessels function, undergo a scan to measure the amount of muscle and fat they have and perform several exercise tests. We will also give them a device to take home and wear on their wrist for a week to look at how they sleep and how much activity they do.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
22/SC/0168
Date of REC Opinion
27 Jul 2022
REC opinion
Further Information Favourable Opinion