NEEMO

National Efficacy-Effectiveness CFTR Modulator Optimisation Programme. Aiming to understand inhaled therapy for people with cystic fibrosis taking modulators.

[NEEMO @NEEMOcf]

1/4 NEEMO a 🧵. You may be wondering what NEEMO is. NEEMO is the National Efficacy effectiveness CFTR Modulator Optimisation programme.

[NEEMO @NEEMOcf]

@thecfphysio presenting preliminary year 1 &2 @NEEMOcf data at #NACFC2023. For more information visit https://t.co/6V4x4SrlXy and follow @cfhealthhub

[NEEMO @NEEMOcf]

Thanks to Karen Bon Berg for highlighting @NEEMOcf as one of the studies working to answer the question of how much inhaled therapy is needed alongside CFTR modulators. Find out more #NACFC2023 on Saturday in session W53 or at poster 613.

[Tracey Daniels @thecfphysio]

#Adherence to inhaled therapies remains an important issue in the post CFTRm era. The @NEEMOcf research programme is designed to better understand the impacts of the choices of pwCF to stop or continue nebs when taking CFTRm. #ECFS2023

[Tracey Daniels @thecfphysio]

“The lung function is still higher than before”. Using a framework to help pwCF & clinicians to pay attention to drops in lung function post CFTRm may be helpful. Hear about the PLUTO framework within the @cfhealthhub programme at poster 209. #ECFS2023

[NEEMO @NEEMOcf]

Come and chat to us about @Neemocf at poster 147 tomorrow at 2pm. #ECFS2023

[Tracey Daniels @thecfphysio]

#Adherence to inhaled therapies remains an important issue in the post CFTRm era. The @NEEMOcf research programme is designed to better understand the impacts of the choices of pwCF to stop or continue nebs when taking CFTRm. #ECFS2023

[CFHealthHub @cfhealthhub]

We’ve made a few changes to our website recently like adding our recent #Awards and some new #Team members. We’ve also updated the @NEEMOcf page! Go check it out to find out more about what we do 👉
https://t.co/fMvFoHINh8

[NEEMO @NEEMOcf]

Attending #NACFC2022 and want to know more about @NEEMOcf @cfhealthhub? Have a look at our pinned tweet for info: https://t.co/gZcvFCbhIG

[Tracey Daniels @thecfphysio]

Morning #nacfc2022. Interested in impacts of preventative inhaled therapy on outcomes with #ETI #Trikafta? Visit @NEEMOcf at poster 301, follow @NEEMOcf @cfhealthhub, visit our website https://t.co/GMj9x3Eb2z or dm me if you’d like to chat or retweet to let your colleagues know.

[Tracey Daniels @thecfphysio]

Morning #nacfc2022. Interested in impacts of preventative inhaled therapy on outcomes with #ETI #Trikafta? Visit @NEEMOcf at poster 301, follow @NEEMOcf @cfhealthhub, visit our website https://t.co/GMj9x3Eb2z or dm me if you’d like to chat or retweet to let your colleagues know.

[Tracey Daniels @thecfphysio]

Exciting developments in mRNA therapies for #CysticFibrosis and a reminder that understanding and supporting adherence to inhaled therapy remains important as new therapies develop @NEEMOcf @cfhealthhub #NACFC2022

[Tracey Daniels @thecfphysio]

Fantastic to see @NEEMOcf highlighted as part of the discussion around the need for preventative inhaled therapies alongside #CFTRmodulator treatment. Thanks to Maggie McIlwaine for including our study in this #NACFC2022 session. More information here: https://t.co/4pXrQrVrra

[CF Learning Network @TheCFLN]

This is fantastic @cfhealthhub Congratulations #CFHealthHub team! Sharing with our a few of U.S. learning network colleagues @ImproveCareNow @IROCNow @ACTNOWCINCY @ACTION4HF @T1DExchange @CaroleLannon @LearningNetwrks @AriccaVC @TDICoproduction @QT_mph #CFQI @CF_Foundation

[NEEMO @NEEMOcf]

The #LearningHealthSystem makes our @NEEMOcf research possible. Have a look at this accessible & quick to read @HealthFdn report to understand more about @cfhealthhub and learning health systems.

[CFHealthHub @cfhealthhub]

Proud that the #CFHealthHub #learninghealthsystem has been recognised as a "full learning health system" in the @HealthFdn report: ‘Developing learning health systems in the UK: Priorities for action’. https://t.co/BcCZJUoQkv 1/3

[CFHealthHub @cfhealthhub]

Being part of a #learninghealthsystem means that data gathered by technology is built into routine CF care. This enables the delivery of projects such as @NEEMOcf, a real-time health technology assessment of Kaftrio, as well as other systems optimisation projects. @HealthFdn 3/3

[NEEMO @NEEMOcf]

NEEMO is part of @cfhealthhub #LearningHealthSystem. The 19-centre, 607-patient RCT to support treatment-taking in adults with #cysticfibrosis is published in May @ThoraxBMJ. Fantastic to find ways to increase #Adherence while decreasing perceived #TreatmentBurden. Link⬇️

[CFHealthHub @cfhealthhub]

Delighted to see the results of the #CFHealthHub multi-component self-management intervention trial published in the May issue of @ThoraxBMJ #cysticfibrosis #learninghealthsystem #habitformation Link 👉 https://t.co/3kgZ1ImTlv

[NEEMO @NEEMOcf]

4/4 We'll be tweeting more information about NEEMO so, if you are interested in the real-world outcomes of #CFTRmodulators for people with CF and in the effects of inhaled therapy on outcomes, please give us a follow or retweet.

[NEEMO @NEEMOcf]

1/4 NEEMO a 🧵. You may be wondering what NEEMO is. NEEMO is the National Efficacy effectiveness CFTR Modulator Optimisation programme.

[NEEMO @NEEMOcf]

3/4 NEEMO is part of the @cfhealthhub #LearningHealthSystem. You can read about CFHealthHub here: https://t.co/6V4x4SqO80. Why not take less that five minutes to watch two videos about CFHealthHub: https://t.co/CS2tExoUuq and https://t.co/XLe530JFes.

[CFHealthHub @cfhealthhub]

Welcome to Twitter @NEEMOcf! 👋 👋

👆Definitely worth a follow for updates on understanding the role of inhaled therapies for people with #cysticfibrosis on modulator treatments @cftrust @CF_Foundation @CFAware