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Global collaboration shows people with CF surviving COVID-19

A new study using international Registry data suggests encouraging health outcomes for those people with cystic fibrosis (CF) who have developed COVID-19, and highlights the need to stay safe and keep well.

The report published in the Journal of Cystic Fibrosis today is the first study of its kind and, led by the Cystic Fibrosis Trust’s UK CF Registry in collaboration with Registries from around the world, analyses the data of people with CF who tested positive for COVID-19.

The study reports on 40 people with CF who tested positive for COVID-19: from Australia, France, Ireland, the Netherlands, New Zealand, Canada, the US and the UK. Of these, 70% have recovered and there are no reported deaths.

Of the 40 cases, 31 had symptoms of COVID-19 when they were tested, and 24 had a fever. 13 patients needed oxygen and one patient required invasive ventilatory support. Four were admitted to intensive care and two remain in ICU. 11 of those who tested positive have also previously had a lung transplant.

The study reports on data collected from 1 March – 13 April; however, the UK CF Registry continues to collect data and has more available already. 17 people with CF have tested positive for COVID-19 in the UK, some of whom were reported to the Registry after the data cut off for the study. The majority have recovered from their infection, with some of the more recent cases still receiving treatment. 

The study shows the proportion of people infected with COVID-19 is about half the levels of the general population, with a rate of 0.07% in people with CF in participating countries compared to 0.15% in their general populations. The publication suggests lower incidence is potentially due to the CF community’s strict adherence to physical distancing and other infection control measures.

Rebecca Cosgriff, study author and Director of Data & Quality Improvement at the Cystic Fibrosis Trust, said: “Our study is the first of its kind to analyse how people with cystic fibrosis infected with COVID-19 are being treated, their symptoms and how they are responding. The small number of people with CF identified with COVID-19 disease across so many countries reflects the tremendous efforts of people with CF and their families to avoid this infection through social shielding. For those people with CF identified to have COVID-19, the outcomes have been encouraging, but this is a small number and it is important that people with CF and their families do not relax the difficult measures they are taking to avoid this infection. We will continue to monitor cases globally to get a clearer picture.”

Dr Keith Brownlee, study author and Director of Policy, Programs and Support at the Cystic Fibrosis Trust, said: “Our data shows that most people with CF are recovering well from COVID-19, however we urge people with CF to stay safe and avoid infection by following government advice on shielding, and to stay well by exercising and taking care of their cystic fibrosis. If they have CF health concerns, then they must discuss them with their CF clinical team.”

Dr Kevin Southern, chair of the UKCFMA, said: “Well done to the UK CF Registry for rapidly co-ordinating this international effort. The results suggest that people with cystic fibrosis and their families are successfully avoiding this difficult infection, through social shielding. And for the small number of people with CF who have had COVID-19, it doesn't appear to be more severe than expected. However, this remains a virus that people with CF should avoid and it’s important they continue with the shielding measures advised in their country.

“It’s also important that people with CF who have symptoms are tested in a safe environment so that their CF teams have clear information to guide their treatment. This will be particularly important over the coming months as governments look to relax social isolation measures."

Download a summary of the article.

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