Question CF @questionCF
2017 we found the 10 most important questions you thought should be answered by clinical trials in CF. We’re looking again. questioncf.org UK Joined March 2016-
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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 ([email protected]) 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.
Cystic Fibrosis Trust @cftrust
26K Followers 4K Following We're dedicated to uniting for a #lifeunlimited for those living with #cysticfibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays.
Alan Smyth @AlanRSmyth
618 Followers 165 Following Paediatrician, Clinical Researcher, Cyclist and Pilot. The views expressed are my own
Gemma Stanford (PhD) @GemStanf
628 Followers 351 Following Head of AHP Research for the HLCC clinical group of GSTT, YOGA-CF co-PI, specialist CF physiotherapist. Current chair of the ECFS PhySIIG. All views my own.
CF STORM @cfstormstudy
237 Followers 61 Following Working with the CF community to find out if we can reduce long term nebulised treatments once people with cystic fibrosis are established on triple therapy.
Cystic Fibrosis Resea... @CFRI_CureCF
2K Followers 2K Following CFRI funds research, provides educational resources and community support, and spreads #cysticfibrosis awareness. #curecf. For more info, visit https://t.co/H2fMOw9N6c
Ben Oxlade-Parker @BenOxlade1
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CF Adventurers @CfAdventurers
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Gunnar Esiason @G17Esiason
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UHB CF Dietitians @CF_dietitians
717 Followers 249 Following Providing nutritional advice for cystic fibrosis patients! Our tweets do not replace the specific dietary advice your own dietitian may provide.
cf/Aware @CFAware
12K Followers 9K Following All about Cystic Fibrosis. Always refer to your team for specialist advice. Oh and we don't always agree with RTs.
Tracey Daniels @thecfphysio
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349 Followers 245 Following Mum, Paediatrician, Researcher, Baker, Gardener, Taster of Wine. Views are my own
CFHealthHub @cfhealthhub
719 Followers 706 Following Digital behaviour change & learning health system to support people with #cysticfibrosis to build habits for treatment-taking. Views of the authors only.
Vertex Save Us @VertexSaveUs
896 Followers 676 Following Global campaign for equitable access to all Vertex CFTR modulator drugs which can extend & save the lives of people with cystic fibrosis (CF) wherever they live
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387 Followers 344 Following Physiotherapist, Oxford Adult Cystic Fibrosis Centre and non-CF bronchiectasis. Interested in ACT, NIV, inhaled therapies and all things that come in a glass.
Dr Sophie Dawson @sophie_doph
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abi halstead @abihalstead
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Prof. Dr. rer. nat. M... @michael_kormann
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ACPCF @acpcf
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Des O’Connell @des73134
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Adrian 🇨🇦🇭�... @adrianmk
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33 Followers 735 Following I'm new to Twitter, just showing up to see what the fuss is all about. What about you?
AMS-Composites @AMSCompositeC
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Pathways Project @PATHWAYS_PWCF
7 Followers 78 Following Pathways is a HRCI/HRB funded research project aiming to support young people with Cystic Fibrosis. We invite young adults with #CF to join us as co-researchers
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Children’s Health a... @CHERC_UoE
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Lori-Lynn Anita 🇨�... @LoriLynnAnita
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Make money easily @0Nvfm03avIYZ5L
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Lena Group Respirator... @Lena_Group4Resp
1K Followers 3K Following 🫁 Welcome to the account of #Respiratory Projects & Events of Lena Group. We support research & education in #RespiratoryDiseases #Bronchiectasis #NTM & others
Carlon lab @CarlonMarianne
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239 Followers 993 Following mother || curious soul || travel love || family || public health || clinical trials II patient engagement
Smoke me a kipper @trebletime23
227 Followers 976 Following I don't want to start any blasphemous rumours, but I think that god's got a sick sense of humour and when I die I expect to find him laughing.....
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26K Followers 4K Following We're dedicated to uniting for a #lifeunlimited for those living with #cysticfibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays.
Cystic Fibrosis Found... @CF_Foundation
30K Followers 2K Following Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress.
Alan Smyth @AlanRSmyth
618 Followers 165 Following Paediatrician, Clinical Researcher, Cyclist and Pilot. The views expressed are my own
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628 Followers 351 Following Head of AHP Research for the HLCC clinical group of GSTT, YOGA-CF co-PI, specialist CF physiotherapist. Current chair of the ECFS PhySIIG. All views my own.
CF STORM @cfstormstudy
237 Followers 61 Following Working with the CF community to find out if we can reduce long term nebulised treatments once people with cystic fibrosis are established on triple therapy.
Cystic Fibrosis Resea... @CFRI_CureCF
2K Followers 2K Following CFRI funds research, provides educational resources and community support, and spreads #cysticfibrosis awareness. #curecf. For more info, visit https://t.co/H2fMOw9N6c
Ben Oxlade-Parker @BenOxlade1
20K Followers 4K Following Husband to a wonderful wife. Father to two boys; a #CFWarrior son (R) and an empathetic son, who's also an amazing big brother (H)! #SWFC
CF Adventurers @CfAdventurers
2K Followers 3K Following CF Adventurers, https://t.co/0WCB7sg5Xf, is a place for people with cystic fibrosis to meet online, support each other, chat, and have fun.
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UHB CF Dietitians @CF_dietitians
717 Followers 249 Following Providing nutritional advice for cystic fibrosis patients! Our tweets do not replace the specific dietary advice your own dietitian may provide.
cf/Aware @CFAware
12K Followers 9K Following All about Cystic Fibrosis. Always refer to your team for specialist advice. Oh and we don't always agree with RTs.
Tracey Daniels @thecfphysio
2K Followers 2K Following Clinical Lead @YorkHullCF • @YorkStJohn @YSTeachingNHS Research Fellow • CI @NEEMOcf • Clinical Lead Innovation @hnypartnership • Trustee @ChildHealthInt1
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5K Followers 2K Following Your source for cystic fibrosis news, support, & real stories from the community. Let’s raise CF awareness together!🎗️
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349 Followers 245 Following Mum, Paediatrician, Researcher, Baker, Gardener, Taster of Wine. Views are my own
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719 Followers 706 Following Digital behaviour change & learning health system to support people with #cysticfibrosis to build habits for treatment-taking. Views of the authors only.
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896 Followers 676 Following Global campaign for equitable access to all Vertex CFTR modulator drugs which can extend & save the lives of people with cystic fibrosis (CF) wherever they live
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387 Followers 344 Following Physiotherapist, Oxford Adult Cystic Fibrosis Centre and non-CF bronchiectasis. Interested in ACT, NIV, inhaled therapies and all things that come in a glass.
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587 Followers 927 Following CF patient on the hunt for phage therapy for my chronic burkholderia gladioli infection. Also Lead Governor @royalpapworth
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Michaela @Michaelastac
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27 Followers 161 Following You will be happy with him That's to get you waiting, Not to him Whom you to get wait
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28 Followers 244 Following Momma bear to 2 girls. Health leader by day, soccer mom by night. Passionate about Primary Health Care reform, health equity and empowering female leaders.
Richmond Community Se... @RichmondCommSvc
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الطريق الى �... @a4eDM0QGZk2pTV3
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Accelsiors Cystic Fib... @AccCysticFibro
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Nelson Sophy Jay illu... @nelson_sophy
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[email protected] @akdhaif
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