RECOVER is a new research study. It’s about a new treatment for kids with CF called Kaftrio®. Research is when we compare one thing to another one and see what is best. We want to compare this new medicine to older medicines and see which one works better for kids with CF. If we do this right, we can learn lots of new things about CF and help people with CF. It is very important to do this because it helps us to look after people with CF in the future.
If we want to see if the new medicine works, we need to do some tests. We can use these to compare the new medicine and the old ones. These tests are:
- A breathing test called LCI. You just breathe normally while watching TV and the machine measures your breathing
- A type of x-ray called a CT
- A blood test. Don’t worry we will collect the blood when you are having other blood tests done anyway
- A sample of poo. The new medicine can make children’s tummies feel better and we can measure this in your poo
- A sweat-test. This is a special watch which makes you sweat, and then collects it
- Breath Collection. This will be just like blowing up a balloon
- An ultrasound test on your belly (jelly on the belly)
- You may have a scan called an MRI that takes pictures using magnets. Our friends in another hospital help us take these pictures. If you are going over to meet them, we will join too!
- We might take a swab from your nose. We might also take a washing of your nose but only if you want to give it a go, and only if this is something that you are already doing at home.
- We want to know about what you know about your CF. We’ll have a chat with you ask you to draw pictures and talk about
- We want to talk to parents of children with CF about this research study. If they agree that it is OK for their kids to be involved and the kids agree it is OK, then we will ask the parents and kids to sign forms so that we can include them in the study.
These tests are not sore and they don’t hurt. Sometimes people find them a little bit uncomfortable, and they do take a bit of time to do – that’s annoying. As part of the study, children with CF would have to come into the hospital with their parent(s) specially to have these done.