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.
Joined April 2022
- Tweets 67
- Following 61
- Followers 237
- Likes 20
42 Photos and videos
Pinned Tweet
4 Aug 2022
Simon, a man living with #cysticfibrosis, describes the importance of studies like @cfstormstudy to guide him on his journey post Kaftrio™
@cftrust @livuni_LCTC
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7 Aug 2024
We did it🏅591 participants now in follow-up! Thank you SO much to everyone continuing to making the trial such a success!! @cfstormstudy @cfstrust @livuni_LCTC @DaviesGwyneth #cysticfibrosis
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9 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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11 Jun 2024
Keep going 🤩, thanks so much to all the sites who helped us reach our recruitment target for April AND May! With two months left we are on track to reach our recruitment target at the end of next month🏆 #cfstrust @DaviesGwyneth
@livuni_LCTC
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11 Jun 2024
CF STORM Breakfast meeting #ECFS2024 fantastic to see those faces behind the CF STORM trial!! #Glasgow #cfstrust @DaviesGwyneth @livuni_LCTC
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23 May 2024
Thank you for all your efforts towards recruitment for @cfstormstudy. We are now on ✨528✨
We are holding a breakfast meeting at ECFS in Glasgow to discuss all things CF STORM. All @cfstormstudy team members are welcome to join us.
@cftrust @DaviesGwyneth @livuni_LCTC
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15 May 2024
✨1000✨ patients randomised into CF Registry based trials (CF START and CF STORM)! What an achievement and what a great resource the CF Registry is for our community @CF_START @cfstormstudy @cfstrust @livuni_LCTC @DaviesGwyneth #cysticfibrosis
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9 May 2024
The @CFSTORM trial finishes recruitment in the summer & we are still on track to achieve our target.
Sites across the UK are looking for patients to help & by recruiting ✨2✨ in each centre we will hit our target.
Thanks everyone, keep going, we can smash this😊
@cftrust
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9 Apr 2024
500 patients now recruited! Well done #KingsCollegeNHS for the 500th recruit🌟 almost there ... @cftrust
@NIHRresearch
@DaviesGwyneth
@livuni_LCTC
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20 Feb 2024
Only 99 patients left to recruit onto the study✨a BIG thank you👏 to all of the sites and people with CF involved in making this research possible!! We're almost there... @cftrust @NIHRresearch @DaviesGwyneth @livuni_LCTC
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30 Jan 2024
What a milestone! We are now 80%✨ of the way to reaching the #CFSTORM recruitment target💛! We have welcomed an amazing 28 recruits already into the trial this month👏!
@livuni_LCTC
@cftrust
@NIHRresearch
#cysticfibrosis
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4 Jan 2024
Happy New Year CF STORM team! We welcomed 20 new participants onto the trial in December big shout out to all our peadiatric sites introducing the 6 years onto the trial 👏 Lets make January another big month 💛
@cftrust
@DaviesGwyneth
@livuni_LCTC
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26 Oct 2023
Did you know that we're now inviting 6-11 year olds to take part @cfstormstudy?!? Please speak to your local CF team to find out more 💛 and visit cfstorm.org.uk #cysticfibrosis @livuni_LCTC
@cftrust @NIHRresearch
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25 Oct 2023
📣400 Recruits & Counting!📣Big thank-you to each and everyone of you taking part🩷Congratulations to all of our 38 amazing #NHS sites for reaching this milestone👏Special shout out to Heartlands @uhbtrust for recruiting the 400th participant @cftrust @DaviesGwyneth @livuni_LCTC
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17 Oct 2023
Congratulations to Dr Pasteur and his team at Norfolk and Norwich University Hopsital for recruiting their first two patients to @cfstormstudy
@NNUH
@livuni_LCTC
@cftrust
@NIHRresearch
#cysticfibrosis #TeamNNUH
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15 Jun 2023
Thank you to Dr Ross Langley and his team at @RHCGlasgow for randomising @cfstormstudy participant 350!
@livuni_LCTC @DrLouThomson @AnnieMayAvenue
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13 Jun 2023
Thank you to the @cftrust for highlighting 'Five things about research to give us hope for the future' and for giving @cfstormstudy a mention! We could not carry out this trial without the unwavering support of the @cftrust and the brilliant team at the CF Registry. @livuni_LCTC
13 Jun 2023
It’s #cfweek and #CF research is in the spotlight! So much still to be done - let’s get those answers. Delighted that the value of UK @cftrust Registry for the #cysticfibrosis community is recognised here along with our @cfstormstudy registry trial! 🫁📈💛 cysticfibrosis.org.uk/news/f…
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CF STORM retweeted
12 Jun 2023
✨ Welcome to CF Week 2023! ✨
Join us as we come together, raise awareness of #cysticfibrosis and unite for a life unlimited.
Head to our website to find out how you can unite with us this CF week. 💛
➡️ ow.ly/GnjR50OKAOB
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2 Jun 2023
Please join the co-Is of the @cfstormstudy at ECFS in Vienna next week. We are holding a breakfast meeting on Friday the 9th of June to discuss all things @cfstormstudy
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18 Apr 2023
Could you help us with the @cfstormstudy? For more information, please visit cfstorm.org.uk or use the QR code on the poster below.
@livuni_LCTC @cftrust @NIHRresearch #cysticfibrosis
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4 Apr 2023
Did you know that the name for the @cfstormstudy came from a member of the CF community? Can you work it out?
If you would like more information about the study please speak to your clinical team or visit: cfstorm.org.uk
#cysticfibrosis @livuni_LCTC @cftrust
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