Official CFRI twitter. The patient registry for people with cystic fibrosis in Ireland. Retweets not an endorsement. Seek the advice of your physician.
Woodview House, UCD
Joined July 2019
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CFRI are delighted to launch our report celebrating 20+yrs of collecting data on people with CF in Ireland.
It covers key longitudinal data trends, the journey of CFRI and reflections on the future.
Please do have a read & share amongst colleagues! cfri.ie/publications/
Team @CFRegistryIE supporting @cf_ireland Christmas Jumper Day #CJD4CF2023 both remotely & in-person!
Team @CFRegistryIE look forward to joining in #CJD4CF during our virtual afternoon coffee break later - photos to follow!
Today's CJD4CF!
If you did not get a chance to organise a fundraiser today, you can still donate by texting ‘FIGHT CF’ to 50300 to donate €4
[Text cost €4. Cystic Fibrosis Ireland will receive a minimum of €3.60. Service Provider: LIKECHARITY. Helpline: 014819311]
#CJD4CF2023
❓ Did you know ❓
You can read & download all our annual reports & publications online.
Annual reports: lnkd.in/eskgweJH
Publications: lnkd.in/ePyskirY
Want to learn more about what we do? Get in touch via 📧 - details on our website.
#CysticFibrosis #Registry
Laura, our Head of Research, is a volunteer leader with the Brownies and Guides in Tullow. On Friday they got on their Christmas jumpers for CF and had a carol service, raising funds for @CF_Ireland #CJD4CF2023
The value of #registry data is dependent on having good coverage of the Irish #CF population. In the early years, the registry worked hard to consent PWCF to the registry & since 2008, CFRI has consistently covered ~90% of the CF population.
#CFRI20YearsAndCounting
ALT CFRI population & coverage (2003-2022)
🥳To celebrate over 20 years of collecting data on people with #CysticFibrosis in Ireland, we launched our 20 years & counting report: cfri.ie/publications/
Over the coming days, we'll be posting about some of the key #Data trends from the report.
Keep an eye out 👀
❓Did you know? CFRI was set up in the late 1990s, with the first annual report published in 2002. Since then we've published over 20 annual reports of the latest data on CF trends in IE.
Annual reports: cfri.ie/annual-reports/
20 years & counting: cfri.ie/publications/
ALT Timeline depicting the history of CFRI in Ireland.
Did you know❓
👉Alongside collecting & reporting data, we are involved in many other research projects
👉 Researchers can also request the use of our data in their own research projects
20 years & counting: cfri.ie/publications/
Data request process: cfri.ie/apply-for-data/
CFRI contribute to the @ECFSRegistry - take a look at their infographics to find out more about data trends across Europe #CysticFibrosis #CF #PatientRegistry
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CFRI's @LauraEKirwan sits on the @ECFSRegistry Executive Committee & attended the recent meeting with the CTN executive committee to discuss joint research projects 👏
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Cystic Fibrosis Registry of Ireland retweeted
CFRI are delighted to launch our report celebrating 20+yrs of collecting data on people with CF in Ireland.
It covers key longitudinal data trends, the journey of CFRI and reflections on the future.
Please do have a read & share amongst colleagues! cfri.ie/publications/
Cystic Fibrosis Registry of Ireland retweeted
Excited to be at the North American Cystic Fibrosis Conference 2023, presenting results of the Irish Comparative Outcome Study Part 2.
#nacfc #nacfc2023 #cysticfibrosis @patriciaefitz @CFRegistryIE @3CF_ie @CHI_Ireland @ucddublin @ucd_sphpss @cf_ireland
The report is testament to the passion, hard-work & dedication of not only colleagues & those who have supported the work of the registry, but also of the continued engagement from people with CF & their families in participating in the registry!
Cystic Fibrosis Registry of Ireland retweeted
DASSL (Data Access, Sharing, Support, Linkage) proof of concept report launched today by @hrbireland. The entire health information system is in the room. Heavy emphasis on improving data quality and value of public engagement. We can do this.. hrb.ie/funding/approved-awar…
Cystic Fibrosis Registry of Ireland retweeted
Dr Niamh Coffey delivering her Sir Wilfred Fish winning presentation on periodontal disease & oral hygiene in adults with Cystic Fibrous. Congratulations Niamh 👏 @BSPerio #BSP2023 #BSP #FishPrize #CysticFibrous #CF #Perio #Periodontology #PerioDisease #UniCork #OralHygiene #OH
We had a great day in Cork on Tuesday, meeting with our friends at @SkinRegs to share learning, research & talking all things registries!
Important recommendations for the research ethics system in Ireland - key to facilitating and supporting high quality research!
HRCI was delighted to host an Irish Health Research Forum focusing on the research ethics system in Ireland in May 2023. We're pleased to now launch the event report which includes 7 constructive recommendations. Find the full report & event snapshot here bit.ly/ForumMay23?utm_source…
