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.
The UK CF Registry, a secure centralised database, sponsored and managed by the Cystic Fibrosis Trust, which records health data on consenting people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland, has joined the UK Health Data Research Alliance along with seven other organisations.
New UK Cystic Fibrosis Registry data shows a 10% rise in the number of people living with CF in the UK since 2011, and a CF population living longer than ever before, with a median predicted survival of 45.1 for 2015.
Here, the UK CF Medical Association (UKCFMA) gives feedback on the monitoring of data collected through the UK CF Registry about the number of people with CF who have had coronavirus (COVID-19). It also advises how people with cystic fibrosis and their families can help minimise their risk of COVID-19.
Long-term data trends published in the UK Cystic Fibrosis Registry 2018 data report present a mixed picture overall, with drops in the prevalence of Pseudomonas and the proportion of people with CF on at least one course of IV antibiotics, but a widening gap in predicted survival between men and women.
On 26 April, the day that would have been the 40th Virgin Money London Marathon, the UK united in a monumental effort to support the nation’s charities by participating in ‘The 2.6 Challenge’. We’ve been blown away by your challenges, and we’re so grateful to you all for your creativity, enthusiasm and support during this difficult time. Here, we share just a few of the incredible stories we’ve seen of how the cystic fibrosis (CF) community are getting involved.
The Cystic Fibrosis Trust is kicking off its new era for research with a £1.5 million investment in two new Strategic Research Centres (SRC) on the topic of ‘personalised medicine’. Professor Jane Davies at Imperial College London will be leading a team exploring a ‘Personalised approach to Pseudomonas aeruginosa infection’. The second SRC ‘Restoring airway function using alternative chloride channels’ will be led by Dr Mike Gray at Newcastle University.
Read the letter from David Ramsden, Chief Executive at the Cystic Fibrosis Trust, to Matt Hancock MP, the new Secretary of State for Health and Social Care, and ask your MP to attend an adjournment debate in the House of Commons. ***updated 16/07/18***