RePHyNe

RePHyNe is a multi-centre international registry of newborn babies with pulmonary hypertension seeking to gain better insight into their care 👶🏽 🫁

[RePHyNe @RephyneRegistry]

🎉 RePHyNe has now recruited 100+ babies across 23 centres — thank you to our amazing collaborative network!
🌍 Interested in joining? National & international centres welcome: https://t.co/3u4X8NaObi
#NeoPH #NeonatalResearch #RePHyNe 🫀🫁

[RePHyNe @RephyneRegistry]

🇬🇧 16 UK centres
🌍 Now open to international centres
👥 53 participants
🎓 1 NIHR aPI graduate

Progress in action!
Find out more in our latest #RePHyNe newsletter 👇

https://t.co/xgQ0ZpQzca

#neoPH #neonatalresearch #NIHR #associatePI

[RePHyNe @RephyneRegistry]

🎉 We’ve now recruited 50+ babies to RePHyNe — a huge thank you to our amazing collaborative network

🌍 We invite international centres to express interest and join us now!

#NeoPH #NeonatalResearch #RePHyNe 🫀🫁

[RePHyNe @RephyneRegistry]

🚨 Recruitment update
RePHyNe is now recruiting using an opt-out consent model.
�� 45 UK patients recruited so far
🌍 International roll-out coming shortly
👉 Get involved, spread the word, and support neonatal research.
#neoPH #neonatalresearch

[RePHyNe @RephyneRegistry]

As we enter the festive period, RePHyNe would like to wish you all a well-deserved break 🎄
We end the year with 14 UK centres recruiting and 30 participants enrolled — fantastic work everyone!
Excited to continue this research and collaboration in the new year ❤️🫁
#neoPH

[RePHyNe @RephyneRegistry]

✴️ 4 centres are now recruiting for RePHyNe, with more sites coming soon!
Catch up on all the latest in our 2nd quarterly newsletter 👉 https://t.co/r1o3jDB2Ts
#PH #NeoPH #RePHyNe

[RePHyNe @RephyneRegistry]

Exciting update! RePHyNe has joined the @NIHRresearch Associate Principal Investigator Scheme
🔎 Learn more: https://t.co/bmuLNzVNZ5
📷 Sign your centre up to the registry: https://t.co/otn3mDugCl
#RePHyNe #NeonatalResearch #PH #NeoPH #NIHR #ClinicalResearch #PIPathway

[RePHyNe @RephyneRegistry]

🚨 Recruitment is underway, and we’re excited to share the first edition of our quarterly RePHyNe newsletter! Dive into the latest updates: 🔗 https://t.co/hQGNGvPv0x #PH #NeoPH #RePHyNe

[RePHyNe @RephyneRegistry]

***Project update*** We’re excited to report that RePHyNe has now launched! This is the first step in creating a global registry of Neonatal Pulmonary Hypertension. Find out more or get involved here: https://t.co/UGG57S3cLX #PH #NeoPH

[RePHyNe @RephyneRegistry]

Professionals, researchers, parents and patients!

Final call to share your insights on important outcomes in neonatal pulmonary hypertension. Your contribution can help shape future care and understanding.

Take part here: https://t.co/5Qy5DKvw1S

Thank you 🫀🫁

#PH #NeoPH

[RePHyNe @RephyneRegistry]

We have launched our Delphi Survey on what outcomes are most important to study in newborn babies with Pulmonary Hypertension ? 👶📷#PH #NeoPH If you have experience caring for babies with PH please contribute by registering for the survey here https://t.co/gQiTKM3Pcy

[PHA UK @PHA_UK]

Was your baby diagnosed with #PulmonaryHypertension? Researchers from The University of Liverpool have launched the second stage of their study into neonatal PH, and they are looking for parents and guardians to complete a 2-stage survey... cont 🧵...

[PHA UK @PHA_UK]

This survey is also open to adults with PH who were diagnosed as babies.
You can register your interest in completing the questionnaire at https://t.co/9B85HLeUAt
This survey is also open to anyone who took part in stage one of the study, which we advertised earlier this year.

[RePHyNe @RephyneRegistry]

Can you help our study looking at what outcomes are most important to study in newborn babies with Pulmonary Hypertension ? 👶🫁🫀 #PH #NeoPH

If so register your interest here https://t.co/gQiTKM4n26

[RePHyNe @RephyneRegistry]

Thanks @PHA_UK for advertising our NeoPH COS study in your new issue of Emphasis - page 9!

👶🫀🫁 #NeoPH #NeonatalPH #PHighters

[PHA UK @PHA_UK]

The new issue of Emphasis is now online: https://t.co/kRmAHHBUdK
It's another packed edition and we hope you enjoy reading it as much as we enjoyed putting it together. If you're a PHA UK member, your 72-page printed copy will land on your doormat very soon 🙌

[RePHyNe @RephyneRegistry]

Only a few weeks left to be involved in part 1 of our research study! Please contact with our team if you are a parent of an affected child who had pulmonary hypertension diagnosed as a baby: https://t.co/Fopz0iPlXo

👀 Part 2: our survey, will launch very soon!

#neoPH 👶🫀🫁

[RePHyNe @RephyneRegistry]

Thanks for the re-tweet @ResearchLWH

Follow the link to register your interest: https://t.co/QjIacL78pP

@Blisscharity @MiracleBabies @PHA_UK

🫁🫀👶

[RePHyNe @RephyneRegistry]

Was your baby diagnosed with pulmonary hypertension (PH)?

We are looking for parents of babies with PH to help our research team determine what are the most important outcomes to study.

To register your interest: https://t.co/npYgukm8TX

@Blisscharity @MiracleBabies @PHA_UK

[RePHyNe @RephyneRegistry]

Thanks @PHA_UK for advertising our study! Please get in contact with our team if you are a parent of an affected child who had pulmonary hypertension diagnosed as a baby: https://t.co/Fopz0iPlXo #neoPH 👶🫀🫁

[PHA UK @PHA_UK]

Researchers from the University of Liverpool are trying to understand the most important treatment outcomes for babies with #PH & they need to interview parents. Could you assist their study?
Details : https://t.co/HVwQeICQ0m
Register your interest: https://t.co/EHB5cu3jX5

[RePHyNe @RephyneRegistry]

Was your baby diagnosed with pulmonary hypertension (PH)?

We are looking for parents of babies with PH to help our research team determine what are the most important outcomes to study.

To register your interest: https://t.co/npYgukm8TX

@Blisscharity @MiracleBabies @PHA_UK

[RePHyNe @RephyneRegistry]

Hello everyone, we're excited to launch our twitter feed for the Registry for Pulmonary Hypertension in Neonates (RePHyNe)! #curePH #neotwitter #PPHN #pulmonaryhypertension #neoheart #neohaemodynamics