Cystic Fibrosis Registry of Ireland

Official CFRI twitter. The patient registry for people with cystic fibrosis in Ireland. Retweets not an endorsement. Seek the advice of your physician.

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

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! https://t.co/0l2e3kM6FG

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

Team @CFRegistryIE supporting @cf_ireland Christmas Jumper Day #CJD4CF2023 both remotely & in-person!

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

Team @CFRegistryIE look forward to joining in #CJD4CF during our virtual afternoon coffee break later - photos to follow!

[CF Ireland @cf_ireland]

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

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

❓ Did you know ❓

You can read & download all our annual reports & publications online.

Annual reports: https://t.co/oiTcneNZYr
Publications: https://t.co/FhV2PmBj4t

Want to learn more about what we do? Get in touch via 📧 - details on our website.

#CysticFibrosis #Registry

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

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

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

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

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

🥳To celebrate over 20 years of collecting data on people with #CysticFibrosis in Ireland, we launched our 20 years & counting report: https://t.co/0l2e3kM6FG

Over the coming days, we'll be posting about some of the key #Data trends from the report.

Keep an eye out 👀

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

@ECFSRegistry @ECFSConference @cf_ireland

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

❓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: https://t.co/MFjahlPizQ
20 years & counting: https://t.co/0l2e3kMEve

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

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: https://t.co/0l2e3kM6FG
Data request process: https://t.co/bRFRupSHeQ

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

CFRI contribute to the @ECFSRegistry - take a look at their infographics to find out more about data trends across Europe #CysticFibrosis #CF #PatientRegistry

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

CFRI's @LauraEKirwan sits on the @ECFSRegistry Executive Committee & attended the recent meeting with the CTN executive committee to discuss joint research projects 👏

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

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! https://t.co/0l2e3kM6FG

[Rini Bhatnagar @BhatnagarRini]

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

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

@cf_ireland @cftrust @ECFSRegistry @ecfs @HRCIreland @IPPOSI

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

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! https://t.co/0l2e3kM6FG

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

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!

[Derick Mitchell @DerickOMisteal]

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.. https://t.co/U9HafKgSYO

[Martina Hayes @Martina_Hayes_]

Woo hoo!! Well done Niamh! @dental_cork @cf_ireland @CFRI_CureCF @CFRegistryIE

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

We had a great day in Cork on Tuesday, meeting with our friends at @SkinRegs to share learning, research & talking all things registries!

[Cystic Fibrosis Registry of Ireland @CFRegistryIE]

Important recommendations for the research ethics system in Ireland - key to facilitating and supporting high quality research!

[Health Research Charities Ireland - HRCI @HRCIreland]

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 https://t.co/52xMf0BYM1