RECOVER is a new research study for some groups of children, adolescents and adults with CF. The study is looking at the new triple combination CFTR modulator therapy (TCM), Kaftrio®. Kaftrio® looks like a very effective treatment so far in the trials that have been carried out, but we want to see in real people, living their normal life, whether it works as well as the trials say it does.
What does the study involve?
RECOVER involves a number of tests and checks. Some of these are the usual tests and checks that people with CF have when they come to the hospital or come for annual assessment. Some are new tests that we only do for this research study. Some of the new tests include:
- A lung CT scan
- A breathing test call LCI – This involves just normal breathing, unlike usual lung function tests which involve blowing forcefully into a tube
- Nasal Lavage – this is like doing a sinus rinse and collecting the fluid
- A sample of poo/stool (people collect this themselves)
- A sweat test
- Interview about your experiences of commencing Kaftrio®
We will be asking how people with CF feel about this new treatment, how it affects their quality of life. We want to see if people change the way they take their medicines when they are on this new drug.
Because we have lots of tests to get through, we don’t think we will get them all done when you come to the hospital for your usual visits. We ask that people come in for an extra visit once a year to get all the tests done.
If you are reading this and considering taking part, it is very important to discuss the study with your parents and the research and clinical team in your hospital, where you can get more information