The UK CF Registry’s Research Committee is a group of CF clinicians, researchers and people from the CF community who review and assess requests for researchers to gain access to anonymised data within the UK CF Registry. To find out how members of the CF community are involved in helping to decide who has access to the data within the UK CF Registry, we spoke to Marian and James about their experiences on the committee.
The SRC programme has been designed to facilitate the clustering of outstanding researchers to carry out joint research activities in areas of strategic importance to people with CF.
Father’s Day 2023 lands at the end of CF Week, so we sat down with some CF dads to hear more about their journey. In this blog, we hear from Daniel, a dad with cystic fibrosis, who told us about having his son Charlie through IVF and what it’s like juggling fatherhood with CF.
In 2022–2023 the helpline had its busiest year ever, receiving 4,800 queries from people needing vital information or support – beating our busiest COVID-19 year of 2020-2021.
