Top Tweets for #cftrmodulators
Our new paper published online early in @MicrobiomeJ
On long-term impact of #CFTRmodulators on the lung #microbiome across adults living with #cysticfibrosis from centres in UK, USA, and Canada
@H_gavillet #CF
https://t.co/I8yeZAjC29
New CF treatment findings: https://t.co/otcu3bhOdk
A new analysis of clinical trial data suggests that Alyftrek, a once-daily CFTR modulator, may improve quality of life more than Trikafta.
#CysticFibrosis #CFNews #CFResearch #CFTRModulators #CysticFibrosisNewsToday #Bionews
See how CF meds help: https://t.co/RTqKx5cOoR
A new study suggests that CFTR modulators may reduce or delay the need for liver transplants in people with cystic fibrosis.
#CysticFibrosisNews #CysticFibrosis #CFTRModulators #CFLiverDisease #Bionews
Our very own @H_gavillet giving her talk @ #ECFS2025 in Milan on the impact #kaftrio on the #CysticFibrosis lung microbiome: a multi-national multi-centre long-term longitudinal study of adults with #CF
@cftrust #trikafta #CFTRmodulators @northumbriauni
Hot off the press! New evidence on CFTR modulators—elexacaftor, tezacaftor, and ivacaftor—showing disease evolution on CT in cystic fibrosis treatment @MDPIOpenAccess #CysticFibrosis #CFTRmodulators #CFresearch #LaPrincesa @SERAM_RX @EurRadiology
https://t.co/vjY4Zh6wvA
Challenges for minoritized populations w/#cysticfibrosis begin w/diagnosis but impact treatment too as a disproportionate number of these folks do not benefit from #CFTRmodulators.
https://t.co/lgCXRUaKuB
Next on our line up is the relationship and effects of #CFTRModulators #HEMT and #BoneHealth in #CF #CysticFibrosis. #NACFC #NACFC2024
Important read—"Nearly 40,000 Americans have #cysticfibrosis, about 15% of whom are people of color." The % of people w/color is even higher among the 10% of the people w/CF that don't benefit from #CFTRmodulators, further exacerbating health inequality. https://t.co/jnqnxrCpir
Our 3 GIFT-CF microbiome studies are all now published
Gut Imaging for Function & Transit in #CF
A main take🏠: #kaftrio/#trikafta has more profound effects on CF gut #microbiome than other #CFTRmodulators
Main findings below...
🧵1/ ⤵️
@cftrust @CFNewsToday @CFAware
Thanks @RoadmapToCF for featuring EE's Chief Scientific Officer, Dr. Chandra Ghose, on today's podcast. Dr. Ghose talks about the final 10% that isn't benefiting from #CFTRmodulators, how special the CF community is & the exciting science coming.
Our podast with @emilysentourage is here! Here from Dr. Ghose regardin the final 10 percent. https://t.co/Gb2KlVPj90
Great to see final part of @RyanJosephMarsh PhD on #CF gut microbiome & #CFTRmodulators out in the wild ⤵️
Impact of extended Elexacaftor/Tezacaftor/Ivacaftor therapy on the #cysticfibrosis gut microbiome
Made possible by @cftrust funding
@DWRivett @AlanRSmyth
Really pleased to share the pre-print for our manuscript looking at ETI therapy on the gut microbiome in pwCF!
https://t.co/zYEZmHsFYz
This concludes the work from my PhD - a huge thanks to my supervisory team @ChrisvanderGast @DWRivett @AlanRSmyth
And of course…
Beautiful post by Lara Govendo about the challenges of being part of the final 10% of people w/ #cysticfibrosis that doesn't benefit from #CFTRmodulators and the self preservation needed to protect your mental health. #raredisease
For 10% of the CF population with rare gene mutations, better treatments are still lacking. Columnist Lara Govendo describes how that feels. https://t.co/96rKzLIy2Z #cysticfibrosis #cfwarrior #curecf #cysticfibrosislife
Really interesting webinar yesterday @vertexpharmaceuticals Indication expansion: Sharing best practice in treating eligible patients aged 2 to <6 years with KAFTRIO®▼ (ivacaftor/tezacaftor/elexacaftor) in combination with KALYDECO® (ivacaftor) #cysticfibrosis #cftrmodulators
A successful evening completing our preschool parents evening for our families with CF @LeicChildHosp, great talks from our CF pharmacist, CF dietitian and CF psychologist #cftrmodulators #healthyeating #selfcare #mdtworking @Leic_hospital @uhltherapy
New study lead by @ChrisvanderGast @DWRivett find #CFTRmodulators Tezacaftor/Ivacaftor has negligible effects on #cysticfibrosis gut microbiome & GI system https://t.co/fsbKyZkRGq
There will never be words powerful enough to convey the depths of our gratitude for those benefitting from #cftrmodulators who remain so deeply devoted to finishing the job for the final 10% — like @drewdotson 🙌🏻
As grateful as I am to have benefitted from recent medical advancements for #cysticfibrosis, there's still plenty of work to be done. Shout out to @EmilysEntourage for all they do for the CF community. 💜
https://t.co/trCdo1Q6Mr
@Genevieve_Hery @LindsayJCaverly @JournalofCF Weiser et al CF-SpIT study may offer a solution to routine🫁infection sampling in era of effective #CFTRModulators. But as most pwCF on Kaftrio are drying up, any sputum sampling will be doubtful. What does that leave? Not BAL. OP or cough swabs? This still needs to be addressed.
YOUR VOICE IS CRITICAL - @EmilysEntourage SURVEY ON #Final10Percent
Intended for those with #CysticFibrosis in the "final 10%" who do not benefitting from #CFTRmodulators, and their family members/legal guardians who are 18+. Approx. survey time: 20 min.
https://t.co/mUz8nwqIPv
Adults with #cysticfibrosis unable to take #CFTRmodulators are being asked to participate in a clinical trial for an investigational gene therapy drug known as 4D-710. Learn more about this #CFresearch.
https://t.co/XDq4LKvWi4
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