@questionCF

2017 we found the 10 most important questions you thought should be answered by clinical trials in CF. We’re looking again.

 UK
questioncf.org
Joined March 2016
  • Tweets906
  • Following1.6K
  • Followers1.5K
81Media
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
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Question CF retweeted
Alan Smyth@AlanRSmyth4 Aug 2025
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
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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/…] #CF
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CF STORM@cfstormstudy9 Jul 2024
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
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Alan Smyth@AlanRSmyth19 Apr 2024
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
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Alan Smyth@AlanRSmyth16 Feb 2024
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/surve…
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Alan Smyth@AlanRSmyth30 Nov 2023
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/u… cftummytracker.org @questionCF
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Alan Smyth@AlanRSmyth3 Nov 2023
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
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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
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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
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Dr. W@LetsGoWVPower1 Oct 2023
Replying to @questionCF
@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!
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Alan Smyth@AlanRSmyth18 Aug 2023
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
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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.… @questionCf @CFAware
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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 ([email protected]) or DM. @DrCatherine_OL @cftrust
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Alan Smyth@AlanRSmyth30 Jun 2023
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/t…

“This is something that's intrusive to everyday life - and that was a strong motivation for me to...

We’re delighted to announce the launch of a new Strategic Research Centre opening at the University of Nottingham, which aims to establish the causes of gut symptoms in people with CF. As the...

cysticfibrosis.org.uk
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Alan Smyth@AlanRSmyth26 Jun 2023
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.… @ebChildHealth @questionCF @CFAware
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Alan Smyth@AlanRSmyth9 Jun 2023
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
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Alan Smyth@AlanRSmyth9 Jun 2023
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
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Alan Smyth@AlanRSmyth8 Jun 2023
Great talk on multisystem MRI scanning by Alex Yule from the University of Nottingham at #ECFS2023 ⁦@questionCF⁩ ⁦@cftrust⁩ ⁦@ebChildHealth⁩ ⁦@CFAware⁩
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Just in case anyone missed the link 😉 A refresh of the top 10 research priorities in cystic fibrosis thorax.bmj.com/content/early…
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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.
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