Local girl, Courtney Read (20 years old), who was born with the life limiting genetic condition Cystic Fibrosis (CF), has been given the opportunity to play her part in steering the future direction of clinical trials and research into CF nationally. The James Lind Alliance Priority Setting Partnership (PSP), supported by the CF Trust and co-funded by the University of Nottingham has launched a project to allow people in the CF community to decide on the top ten priorities for research and funding into their condition.
The PSP workshop will take place on 13th January 2017 at the University of Nottingham and will bring together for the first time sufferers of CF, their parents, friends and a range of professionals, clinicians and other team members responsible for their care, in order to identify what research into CF should be prioritised.
When asked why the Partnership is so important for the 10800 people across the UK and Channel Islands with CF, Courtney said, “In the past people with CF and their families have not been consulted about what they believe are the most important topics for clinical trials and research. After all we are the people that live with the condition 24/7 and that experience should inform what research will be of greatest benefit to the CF community. I suffer from a range of other symptoms linked to my CF like joint pain, migraines and insomnia which if understood and managed better would make a huge difference to the quality of my life and would allow me to just concentrate on dealing with my CF.”
Sufferers like Courtney who are taking part will be connected to the conference and workshops via a video link because those suffering from CF aren’t allowed to be in the same room together for fear of cross infection that could seriously impact their fragile lungs.
Professor Smyth who has worked with the PSP steering committee and worked to obtain the funding for the project from the CF Trust knows that partnerships like this have been undertaken very successfully in other medical conditions and believes this approach could energise the CF community in the same way. He says,” I believe it will allow us to listen to the priorities of the people with CF and to develop research projects that they want to participate in because they address the questions that matter to them.”