ManchesterCFResearch
@Manchester_cf
From the Cystic Fibrosis research group at Manchester University. A forum to update public, patients, and other researchers on what we do and why we do it.
Manchester is host to the PULSE-CF Research Innovation Hub, a major new research initiative from @cftrust and @LifeARC . You can find out more about the hub from pulse-cf.com and see our new study animation at vimeo.com/1049633163
The CF-Tracker study opened today at @ManchesterCRF ! Huge thanks to the team and to Tom, our first participant (of many!)

Want to join a brilliant team - we are hiring! Looking for a new clinical research fellow to join the new CF Research Innovation Hub. Great opportunity to work on CF infections and exacerbations and study for a PhD. Job link below bmj.com/careers/job/21…
Our Director of Medical Affairs, Dr Keith Brownlee, shares his advice for those struggling to access creon as supply issues continue. (1/4)
Right now, most long-term lung conditions are detected when there is irreversible damage to the lungs. Being able to intervene before the damage is permanent is crucial and only possible if we #FundRespiratoryResearch. Read our report on the @ThoraxBMJ: bit.ly/4dpDVoh
Have you entered our Summer raffle yet? 🌞 Enter by 12 Aug for just £1 and be in with a chance of winning a £2,000! Every ticket you buy or sell will help us continue to fund essential research to provide life-changing treatments for people with CF. ⛱️ ow.ly/KfBJ50SRkI2
Today we got accredited! Still awaiting result and full feedback but they did mention that the patient feedback was the best they’d had from any ward they’d done so thank you to all of you who gave us feedback today and through your surveys! & well done to the team on today ⭐️🤞🏼
You can shape the future of research into breathlessness, something that affects everyone living with a lung condition. Take @ALUK_Research’s short survey to share your research priorities: bit.ly/3W7kUAB
It’s scary when you can’t catch your breath. What do you think future research into why people struggle to catch their breath should prioritise? Take @aluk_research's short survey to share your top 10 research priorities: orlo.uk/HiQDO
Catch up on series two of our #CForYourself podcast with Lucy Baxter. We're currently planning series 3, so send us your ideas for what you'd like to see covered by emailing [email protected]. ➡️ Search 'CForYourself' on your usual podcast provider app to listen.
We're delighted that our Clinical Trials Accelerator Platform was included as an example of a charity-funded research asset by @AMRC in their 'Spotlight on research infrastructure' report last week. Find out more about CTAP on our website #cfnews ➡️ ow.ly/8g1u50SIcQH
We’ve published final guidance recommending #CysticFibrosis treatments, Kaftrio, Symkevi, and Orkambi, following a new commercial deal between @NHSEngland and Vertex. Find out more⤵️ nice.org.uk/guidance/ta988…
Our website has the latest information on Creon, you can check this out via the link in our bio. Please do get in touch with your CF teams if you are struggling to access Creon from your local pharmacy. cysticfibrosis.org.uk/what-is-cystic…
A message from our Chief Executive, David Ramsden, following the final guidance published today from NICE.
Please help with this survey if you can, and share with others 👇🏻
UK #CysticFibrosis community! Tell us about your thoughts on inhaled meds & interacting with your care providers post-Kaftrio in this anonymous 5-10 min research survey. Your voice matters! Please share! [shef.qualtrics.com/jfe/form/SV_6V…] #CF
By joining our Involvement Group, your voice can be heard by researchers, clinicians, pharmaceutical companies and important regulatory organisations like the MHRA and NICE. Email [email protected] if you would like to know more about how you can get involved.
We congratulate @Keir_Starmer on his appointment as Prime Minister and look forward to working with @wesstreeting, the new Secretary of State for Health to make people with #cysticfibrosis a priority.
Spotted: the BT Tower in London getting involved with #WearYellowDay this year! 💛🎉
Was great to be able to discuss CF on @BBCBreakfast this am, but sorry I couldn’t find anything yellow to wear for @cftrust #CFweek !
Fantastic to see our @AlexRHorsley on @BBCBreakfast this morning discussing the benefits of #kaftrio for #CF patients. Clinical research at its best @ManchesterCRF @ManchesterBRC @MFTnhs