Global CF Registry collaboration shows latest impact of COVID-19

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A new global report using UK Cystic Fibrosis Registry data shows the number of people with cystic fibrosis (CF) who have become seriously ill or died from coronavirus (COVID-19) is low worldwide.

The research study, published in the Journal of Cystic Fibrosis, is led by the UK CF Registry in collaboration with CF registries from around the world. The data analysed 181 people with CF who tested positive for COVID-19 globally. Of these, there were 11 people with CF admitted to intensive care and seven deaths. One death was reported as being related to advanced CF disease and not COVID-19.

Expanding on previous findings announced in April 2020, today’s publication suggests that outcomes for most people with CF who have tested positive for COVID-19 are less severe than originally anticipated at the start of the pandemic.

However, while most people recover from the infection, there have been some recorded cases where COVID-19 has caused more serious illness. The analysis found that lower lung function in the year prior to infection or having an organ transplant may be linked to more severe cases of COVID-19, with a higher number of people post-transplant needing to be admitted to hospital (74%) than those who had not had a transplant (46%). Three of the six COVID-19 deaths were in the post-transplant group, highlighting the importance for the flu vaccine for people with cystic fibrosis.

With so much about COVID-19 still unknown, the authors of the study still urge that those with CF and their clinicians remain extremely cautious. Dr Keith Brownlee, study author and Director of Policy, Programs and Support at the Trust, said: “It’s encouraging to see that most people with CF are doing well after being infected from COVID-19. But it is still a reminder of how serious the disease can be, so we urge people to stay safe and follow the latest government guidelines. It’s also important for people to look after their general health and keep exercising and taking care of their cystic fibrosis.”

The UK CF Registry will continue to collect data on diagnosed cases of COVID-19 in people with CF, in collaboration with global CF registries, and will publish further information in the coming months. There will also be a follow up on the medium-to-long term effects of the virus on people with CF, as the long-term impacts of the disease remain unknown.

COVID-19 and CF: what the numbers show

The data from this study was pulled together from a collaboration of global CF registries, analysing anonymised data on people with CF diagnosed with COVID-19 prior to 13 June 2020 from 19 countries, including Australia, France, Ireland, the Netherlands, New Zealand, Canada, the US and the UK.

The average (median) age of people in the cohort was 27 years, with the youngest patient being under the age of one year and the oldest being over 70 years old.

149 people had not had a transplant and 32 were post-transplant. 31% had CF-related diabetes (CFRD) and 3% had poor lung function in the year before having COVID-19.

Overall, the outcomes of COVID-19 in people with CF seem to show a similar spectrum to that in the general population.

To help the Trust fund vital research like this and support people with CF during the COVID-19 pandemic, make a donation today.

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