5 things to know about the RECOVER study

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We know that everyone’s CF is different. This includes the differences in the effects that people taking Kaftrio experience. Our Research in Focus report on the long-term effects of Kaftrio, published today, explains why it's important to understand more about this medicine. Cystic Fibrosis Trust is a co-funder on a research study called RECOVER that aims to understand the ‘real world’ effects of Kaftrio. Here we explain five things to know about the RECOVER study.

1. The clinical trials haven’t told us all we need to know about Kaftrio

Clinical trials are an important step in understanding how a new medicine can affect us. When trials are run, the researchers have to choose what to look at to measure these effects. For example, in the Kaftrio clinical trials one measure that was used was changes in the lung function measure FEV1. Now that Kaftrio has been licensed, researchers are doing studies to look at its effects on many more symptoms of CF.

2. Everyone taking part is on or about to start taking Kaftrio

In ‘Real World Evidence’ studies like the RECOVER study, everyone who takes part in the study will be taking the medicine. Where possible, people will do the first RECOVER study visit before they started taking Kaftrio. This is different to other clinical trials, where it is common for some people on a trial to be taking different medicines or no medicines at all. It also means that if you’re unable to tolerate Kaftrio or it isn’t suitable for your form of CF, you are not able to take part in the RECOVER study.

3. You can get involved in the RECOVER study too – just like Carolyn’s son did

“Matt started taking Kaftrio 15 months ago and we feel really lucky to have access to it. When he began taking it, he enrolled into the RECOVER study to help researchers understand the long-term effects of taking this medicine. Kaftrio has arrested his decline, it isn’t a cure but we are realistic and grateful that his health has stablised.”

The RECOVER study is currently recruiting children aged 6 – 12 who have just started taking Kaftrio. To find out more visit our Trials Tracker.

4. The effects of Kaftrio are being assessed in new ways that haven’t been investigated before

One thing that people have noticed since taking Kaftrio is that their lung health has improved. When people have good lung function, tests such as FEV1 may not be as helpful at spotting any potential problems. In the RECOVER research study, researchers are using a more sensitive measure of lung function, called lung clearance index (LCI). “Now people are on CFTR modulators such as Kaftrio for longer, we need sensitive ways to pick up any ‘silent lung disease’,“ said Professor Jane Davies, co-Principal Investigator on the RECOVER study.

5. The results will help improve CF care around the world

“We can’t just look at the RECOVER study as an individual study answering a specific question, we should look at this as a study that’s part of an international jigsaw that’s helping us to understand CF better, understand how we should be treating it and understand what are the things that are still left for us to discover.

"For example, a better understanding of how Kaftrio affects CF infections, will inform future care for everyone with CF, not just those on this modulator” said Professor Paul McNally, who is Principal Investigator of the study.

The RECOVER study is funded by the CF Foundation in United States, CF Ireland and Cystic Fibrosis Trust.

Download our Research in focus report to read more about it.

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Caitlin

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