UK CF Registry response to COVID-19: monitoring, reporting and global collaboration

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Using data to understand health has never been more important than during this global coronavirus (COVID-19) pandemic. The UK Cystic Fibrosis Registry has moved quickly in its response to COVID-19 with a helpline to make it easier for clinical teams to report data, weekly reporting of statistics and a global collaboration to gather data on COVID-19 in cystic fibrosis.

COVID-19 reporting hotline

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 UK CF Registry, as a secure centralised database that can link information on COVID-19 to people’s medical history and their future health, was the sensible mechanism for this important work.

We set up a COVID-19 reporting ‘hotline’ so that the need for detailed ‘live’ information didn’t conflict with healthcare teams being able to focus on providing front-line clinical care. Cystic fibrosis doctors and nurses can contact the helpline to trigger a callback from the Registry team, who collect and enter the data on behalf of the clinical team. With the support of the UK CF Medical Association, this hotline has enabled us to build a clear picture of the extent to which COVID-19 is impacting people with cystic fibrosis.

This approach has been further supported by NICE, which released its special rapid guideline on caring for people with CF during the pandemic and included the recommendation that all COVID-19 cases are reported to the UK CF Registry.

We are hugely grateful to CF clinical teams across the UK for embracing this initiative and enabling COVID-19 to be monitored so closely. Watch our video describing the COVID-19 reporting hotline as it was first set-up.

Weekly COVID-19 reporting

On a weekly basis the UK CF Registry reports detailed but anonymised information on COVID-19 in CF to the UK CF Medical Association (UKCFMA). The UKCMFA is supported by the Trust to cascade learnings to the entire membership of over 200 CF doctors. This information encourages discussion among CF doctors that informs the UKCFMA’s updated statements, as well as a considered approach to caring for people with CF during this time.

We also update high-level statistics on COVID-19 in people with CF each week. 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.

European Cystic Fibrosis Society

We also contribute aggregated information to the European Cystic Fibrosis Society (ECFS), which shares high-level information about COVID-19 in people with CF across most of Europe on a weekly basis.

Global CF Registry collaboration

You may have seen our video describing a paper that was published on 40 cases of COVID-19 in people with CF from seven countries around the world. This was made possible due to an existing collaboration of CF Registries that was mobilised to generate as much information as possible, as quickly as possible, about COVID-19 in cystic fibrosis. This collaboration is important because that the number of cases around the world is thankfully quite low.

The paper, published on 29 April, is the first study of its kind and presents data suggesting encouraging health outcomes for people with CF who have had COVID-19. Learn more about the study.

What’s next?

The collaboration is focusing on involving as many countries as possible, with plans to update the statistics published in the paper by writing a letter to the editor of the Journal of Cystic Fibrosis as soon as possible. We are hoping that the next update will include cases from as many as 18 countries, representing a truly global picture of COVID-19 in cystic fibrosis.

At a time when we might feel more separated than ever, it’s really encouraging that this spirit of collaboration and openness means data can be drawn together to benefit people with cystic fibrosis.

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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