Top Tweets for #Future4CF
Research doesn’t stop with Kaftrio and a significant number of pwCF are not eligible for modulators. Which is why on #RareDiseaseDay it’s important to consider the research options coming through, and we’d encourage you to read this excellent thread! #future4cf
This #RareDiseaseDay we’re focusing on 5 things people with #cysticfibrosis who are unable to benefit from CFTR modulators should know.
We won’t stop until everybody with CF can access the treatments they need. (1/6)
Really important thread here. #future4cf
This #RareDiseaseDay we’re focusing on 5 things people with #cysticfibrosis who are unable to benefit from CFTR modulators should know.
We won’t stop until everybody with CF can access the treatments they need. (1/6)
We delivered this at @ManchesterCRF and @MFT_Research and are also taking part in the phase 3 study. Great to see it finally in print, and great to see treatment advances continue, not stopping with kaftrio. #future4cf
Delighted to share these early trial results on a new triple therapy for CF, because it doesn’t stop with kaftrio!
Once daily TC with similar/better efficacy than kaftrio. Now in phase 3!
@VertexPharma @ManchesterCRF @cftrust
https://t.co/9YQ2nwgYue
To take part in the NIHR BioResource – Rare Diseases study in CF, people will be asked to give a blood sample and information about themselves. Martin asked that all-important question – how much blood?!
#Future4CF
https://t.co/hzz0VwTk1P
So great to be at the @cftrust CTAP clinical trials conference in Nottingham. Planning and discussing the future of cf trials for the new era. Some fantastic speakers on the agenda.#future4cf
On this #RareDiseaseDay it’s important to remember that around 10% CF patients don’t respond to modulators, and the search for effective treatments continues apace… #future4cf
HIT-CF project continues to work hard on finding treatments for those without the option of CFTR modulators.
See video explainer!
https://t.co/byLc8xJ4FS
The Principal Investigators of the CF project within the NIHR BioResource Rare Diseases study are excited about the difference the research could make for the CF community, and attracting CF research studies into the UK.
#Future4CF
https://t.co/THky7o1Nd3
Each person with CF has a different experience. The NIHR CF Bioresource project allows researchers to understand how someone’s genetic makeup affects their CF. It's strengthened by the number of people joining. Professor Floto explains more.
#Future4CF
https://t.co/FswlxJDpBQ
Everyone has their own motivations for getting involved in CF research, such as the exciting CF project in the NIHR BioResource Rare Disease Study.
Find out why Martin, one of our Clinical Trials Ambassador’s is getting involved here - https://t.co/Qu92FIcWAs
#Future4CF
We’re very excited about the new @NIHRBioResource project for #cysticfibrosis but what questions will it answer for the CF community?
Find out more https://t.co/eZFg3jYs2a
@AndresFloto | @AlexRHorsley | #Future4CF
#ClinicalTrials are an important part of judging the safety and effects of new #cysticfibrosis treatments. We report on a recent workshop to ensure they measure what matters to people with CF – every time!
https://t.co/V6u4dYAUhz
#Future4CF #patientinvolvement
@AlanRSmyth
Well done Sarah! Who I’m pleased to say is now our @cftrust trials coordinator for #CF! Still plenty of work to do #future4cf
Well done to Senior Clinical Trials Coordinator, Sarah on her Excellence Certificate for her pro-activeness and excellent organisational skills, including her work on our Falcon study – of over 2200 participants. 👏
https://t.co/tI4cqz4pEP
Access to new treatments begins with #clinicaltrials. #ICTD2021 is a great opportunity to reflect on the advances in #cysticfibrosis treatment made possible by people with CF taking part in trials over the years. Read our impact report here https://t.co/yT2Z4yKkvi #Future4CF
For the last 3 years, we have been asking the #cysticfibrosis community for their thoughts on clinical trials via an annual survey.
Luci O’Reilly, Clinical Trials Involvement Coordinator, talks about results from the 2020 survey & potential #Future4CF: https://t.co/N2crICPFCc
"It's the CF community's involvement that glues those pieces together."
Watch our latest CF Live on how Involvement is driving forward CF care, research, new treatments, recognition and support: https://t.co/3etCWLWVPu #Future4CF
CF STORM is a ground-breaking trial to find out if people receiving #Kaftrio can safely start to reduce the number of treatments they manage as part of their daily life. Read about how it fits with the #Future4CF here:https://t.co/NqrERD2B4h @DaviesGwyneth @UCLchildhealth @LivUni
#Clinicaltrials are crucial, but lack of awareness can prevent people w/ #cysticfibrosis from taking part. Our Involvement Manager, Lorna, sat down with Jane & Bethan, Bethan’s mum Lisa & Alder Hey Trials Coordinator Vicky, for our CF Life mag https://t.co/h66AtaS8Lp #Future4CF
Thanks to everyone who came to our CF Live tonight. It was great to see people sharing their experiences of #clinicaltrials & hear all about emerging therapies we can expect to see progressing through CF clinical trials! Keep an eye out for the recording 👀 #Future4CF
We are also going to be chatting all about #clinicaltrials and why they continue to be important for the #Future4CF in our CF Live event tonight! Join us to find out more by signing up here: https://t.co/K7U5qDWyaE
We are also going to be chatting all about #clinicaltrials and why they continue to be important for the #Future4CF in our CF Live event tonight! Join us to find out more by signing up here: https://t.co/K7U5qDWyaE
We are also holding a CF Live event next Wednesday to talk about #clinicaltrials and why they continue to be important for the #Future4CF. Join us to find out more by signing up here: https://t.co/K7U5qDWyaE (2/2)
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