CF Registry in UK Collecting Data on COVID-19 Infections

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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During COVID-19, the U.K. Cystic Fibrosis Registry is taking steps to further the collection of data on how the ongoing pandemic is affecting people with cystic fibrosis (CF).

The CF Registry, managed by the Cystic Fibrosis Trust, records data on patients in England, Wales, Scotland, and Northern Ireland.

“It was clear early on that monitoring the impact of the pandemic on people with cystic fibrosis (CF) in real time would be vital in ensuring that the Cystic Fibrosis Trust and clinical teams are able to provide the best support for our community now and in the future,” the Cystic Fibrosis Trust stated in a press release.

This registry has set up a COVID-19 reporting hotline to facilitate data collection. Healthcare providers can call the hotline, which will trigger a return call from a registry team to collect and enter data on the providers’ behalf. This allows healthcare teams to report data quickly while keeping the focus on front-line clinical care.

This approach is supported by U.K.’s National Institute for Health and Care Excellence (NICE). Recent NICE guidelines recommend that all cases of COVID-19 in people with CF should be reported to the registry.

The CF Registry is also publishing high-level statistics relevant to COVID-19 and CF in the U.K., which are updated on a weekly basis. Weekly updates are also being given to the U.K. CF Medical Association (UKCFMA), a group of over 200 CF doctors across the kingdom. Shared data, and subsequent internal discussions, are being used to inform care strategies for people with CF during the pandemic, as well as to support UKCFMA’s statements on the situation.

“We hope this information will help to reassure people with cystic fibrosis that the situation is being closely monitored. As soon as information that might affect recommendations for people with cystic fibrosis can be detected, it will be shared,” the Cystic Fibrosis Trust stated.

The CF Registry is also working with the European Cystic Fibrosis Society (ECFS) and other international bodies to paint a global picture of CF and COVID-19. Such international cooperation is particularly important because the overall number of people with CF infected with COVID-19 is relatively low.

A recently published research paper led by the CF Registry, in collaboration with other registries around the world, reported on 40 cases of COVID-19 in CF patients in eight countries. Data suggested a good recovery from infection with the virus among these people, with their COVID-19 disease following a course similar to that of the general population.

The CF Registry plans to update the statistics published in that study — including cases from up to 18 countries — in  a letter to the editor of the Journal of Cystic Fibrosis as soon as possible.