***Edited 21 March*** The cystic fibrosis (CF) community has the opportunity to help develop four research topics into more specific questions that are capable of being answered through clinical trials, as the second phase of the James Lind Alliance Priority Setting Partnership (JLA PSP) in CF, supported by the Cystic Fibrosis Trust, gets underway.
The Scottish Medicines Consortium (SMC) have not been able to recommend the routine use of cystic fibrosis drugs Orkambi and Symkevi by NHS Scotland citing that there is not sufficient evidence to justify their cost, announced today, Monday 12 August 2019.
NHS England has announced a deal for access to the life-saving drug Kaftrio (called ‘Trikafta’ in the US) on the day it receives its European licence, bringing hope to thousands across the UK.
Today the Cystic Fibrosis Trust launched a new software system for the UK CF Registry, the Trust’s secure database that contains clinical data on thousands of people with cystic fibrosis in the UK who have consented to its use.
Chief Executive of the Cystic Fibrosis Trust, David Ramsden, writes about how the Trust is working to support people with CF from black, Asian and minority ethnic groups and why we want to do it better.
