Question CF

If you’d like to know more about this project brought to you by researchers from @ebChildHealth at Nottingham Uni, People with CF, Parents of people with CF and members of MDT’s across the country please visit our website questioncf.org

Excited to offer participation in GRAMPUS-CF to patients with cystic fibrosis worldwide. Just click on the link to join the study! grampus-cf.org @cftrust @CF_Foundation @alloonsl @CFAware

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

We are delighted to announce that we only have 20 participants left to recruit! ✨Can you help us reach our goal by the end of July so we can finally answer this important research question? @cfstormstudy @cfstrust @livuni_LCTC @DaviesGwyneth #cysticfibrosis

Great to see the James Lind Alliance refresh for Cystic Fibrosis getting a shout out from @Paula_Sommer at #CFGI24. Research priorities for CF jointly agreed by people with CF and clinicians. @CFAware @questionCF @cftrust @CF_Foundation

Calling parents, children and young people who have been seen in a hospital emergency department. The James Lind group for children's emergency medicine want to know your research priorities. Take the survey! @questionCF @RCPCHPresident redcap.liverpool.ac.uk/surveys/?s=9RD…

Thanks to Belinda Cupid for a great article on the use of apps in cystic fibrosis care including CF Tummy Tracker! cysticfibrosis.org.uk/news/using-app… cftummytracker.org @questionCF

Great plenary talk from Luke Hoffman at #NACFC2023 emphasising the importance of better antibiotic therapy to patients with cystic fibrosis. @cftrust @CF_Foundation @questionCF @CFAware

Brilliant day facilitating the @cftrust research conference. So many talented researchers working in true partnership with the CF community. Also great to see how the @LindAlliance @questionCF refreshed priorities are shaping the research agenda #ukcfc

Start tracking your tummy symptoms now to help the #CF community with gastrointestinal issues! Only 15 spots left, so go to Cftummytracker.org to register on our app @CFAware @questionCF Thank you to all participants and @cftrust @CFAustralia @CF_Foundation

@questionCF I'd love to see more research into the mental health issues in families of children with cf. How can we help parents and siblings? Because as a daddy of a CFer, it's freaking hard!

Said "au revoir" to Nottingham colleagues this week after 27 years in the city. Thanks to the best research group in the world for the kind gifts (including crocheted lungs) and the aeroplane cake! @ebChildHealth @CFAware @questionCF @ThoraxBMJ

1. Addressing tummy symptoms that matter to YOU! Cystic fibrosis (CF) is not just about the lungs! Tummy symptoms are increasingly recognised as having a big impact on people with CF. tandfonline.com/doi/full/10.10… @questionCf @CFAware

Hi everyone, recruitment is still open. If you are an adult with CF and cannot benefit from Kaftrio/Trikafta due to genetic factors, please consider participating. For further information, please contact me via email (mwelwam@cardiff.ac.uk) or DM. @DrCatherine_OL @cftrust

A big thank you to the CF Trust for supporting the GRAMPUS-CF Strategic Research Centre! ⁦@CFAware⁩ ⁦@questionCF⁩ ⁦@ebChildHealth⁩ ⁦@cftrust⁩ ⁦@CF_Foundation⁩ cysticfibrosis.org.uk/news/this-is-s…

Great to see this systematic review of gut symptoms in cystic fibrosis published open access today. Flatulence, bloating and fatty stool are the major culprits! tandfonline.com/doi/full/10.10… @ebChildHealth @questionCF @CFAware

Not the meds? Dr Helen Love warms up her audience with a programme of stretches prior to her giving a great talk at #ECFS2023! ⁦@questionCF⁩ @cfaware ⁦@ebChildHealth⁩

Kudos to Florence Lockwood, medical student at UoN, for a beautiful explanation of faster orocaecal transit time in cystic fibrosis during ETI treatment @ECFS2023 Part of the GIFT-CF 3 study. ⁦@ebChildHealth⁩ ⁦@CFAware⁩ ⁦@questionCF⁩

Great talk on multisystem MRI scanning by Alex Yule from the University of Nottingham at #ECFS2023 ⁦@questionCF⁩ ⁦@cftrust⁩ ⁦@ebChildHealth⁩ ⁦@CFAware⁩

Just in case anyone missed the link 😉 A refresh of the top 10 research priorities in cystic fibrosis thorax.bmj.com/content/early/…

Thanks @AlanRSmyth for presenting the @questionCF priority refresh poster & adding many links to the newly published poster! I’m so sad to be missing #ECFS2023 in #Vienna but enjoying reading everyone’s Twitter posts. Poster 089 if anyone wants to visit.