Trust-funded researchers within our UK CF Innovation Hub partnership have published their work in the journal ‘Science’ about how M. abscessus is evolving in the lungs of people with CF to become more virulent, suggesting that changes may need to be made in the way this infection is managed.
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Rebecca Cosgriff, Director of Data and Quality Improvement
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It’s been over a year since the first lockdown was announced in the UK. It’s also been a year since an international collaboration of global cystic fibrosis (CF) Registries, led by the Cystic Fibrosis Trust, began monitoring coronavirus (COVID-19) in people with cystic fibrosis. In this blog, Rebecca Cosgriff, the Trust’s Director of Data and Quality Improvement, reflects on the swift actions taken by CF Registries worldwide, what we now know, and what the future holds for studying COVID-19 and cystic fibrosis.
Everyone with cystic fibrosis (CF) aged over 16 years will have now been offered both doses of the coronavirus (COVID-19) vaccine, but the roll-out has not been without its challenges. Research from the British Medical Journal has indicated that there is much greater vaccine hesitancy among people from some ethnic minorities. We spoke to 42-year-old Gullfiaz Hussain, who has CF, about his reflections on shielding, vaccine hesitancy within Black, Asian and minority ethnic (BAME) groups and his own experience of taking the jab.
Forming The Global Registry Harmonization Group, experts including those from the Cystic Fibrosis Trust have written in the Journal of Cystic Fibrosis about how people with cystic fibrosis (CF) need vaccine distribution strategies that work, are aggressive, and follow the science.
Although we still can’t meet in person for fundraising events, Sarah and her friends found a virtual way to run together as a team. Over the Easter weekend, over 70 runners across the UK (and internationally!) took on a half marathon to raise money for Lucy, Sarah’s 17-month-old daughter who has cystic fibrosis (CF). Here, Sarah reflects on organising an event during lockdown, her highs and lows, and her tips for training during a pandemic.
This year, our annual UK Cystic Fibrosis Conference (UKCFC) will be held entirely online for the first time, on Wednesday 12 May 2021. The conference is an informal opportunity for the CF research community to share their results, generate new ideas and spark interest in new collaborations. Read on to find out about some of the exciting research being presented at UKCFC this year.
When Tim was diagnosed with cystic fibrosis (CF) in 1971, his parents were told he would only live to his teenage years. Instead, he celebrated his 50th birthday earlier this year. Tim, who has the double Delta F508 mutation, works full time as a Communications Manager in South London, where he lives with his wife, Katie, and 13-year-old son, Felix. In this blog, Tim takes a look back on how CF treatments have evolved over the last 50 years and reflects on key moments that changed his life, including cross-infection risks and Kaftrio.