Children’s and Emory Pediatric Cystic Fibrosis Program

07/31/2025

Big news – the RETRIAL study is officially LIVE! RETRIAL (Restarting Triple Therapy with Robust
Monitoring for Adverse Events) is now open to those ages 6+ who’ve had mental health, sleep,
cognitive, or liver issues while on Trikafta. This study aims to explore how patients respond to the new
FDA-approved modulator, Alyftrek®. We’re one of 15 centers recruiting for this pivotal study—if you're
interested, reach out to your CF care team or contact the CF research team at CF.research@emory.edu
for more info!

07/23/2025

Rachel Linnemann, MD and Olivia Ries, Children’s quality specialist, coauthored a newly published CF study in Pediatric Pulmonology on improving modulator management and side effect screening at CF centers nationally. See more info here ⬇️
https://pedsresearch.org/news/childrens-emory-cystic-fibrosis-specialist-dr-rachel-linnemann-publishes-article-on-modulator-management-enhancement-and-improved-side-effect-screening-at-cfln-centers-nationally

05/17/2025

We had such fun at Great Strides today! 💜 Your CF@LANTA care center team

05/06/2025

The CF Foundation’s ResearchCon is tonight! It’s a great agenda - registration info below!

03/04/2025

✨ Exciting News! ✨ Dr. Rachel Linnemann and colleagues presented results today from a national quality improvement project at the Cystic Fibrosis Learning Network’s Community Conference in Denver, CO! The project aimed to improve modulator management, side effect screening, and support for shared decision making!

💙

02/14/2025

"💖 This week love and support were in full bloom! 🌸 Our adult and pediatric CF team came together for a special meeting, all in the spirit of helping young adults transition to adult-centered care with the love and guidance they deserve. 💙 It’s all about community, care, and growing stronger together—because every step forward is filled with compassion and support. Make possible by a really wonderful team! 🌟 "

02/01/2025

Happy CF Family Education Day! It’s breakfast and arrival time now. If you are attending virtually, log on by 9:30!

01/29/2025

📚📚It’s almost time!!! RSVP by Friday January 31st at noon to attend a day filled with education and networking! Looking forward to seeing everyone there!📚📚

01/15/2025

Check out our new instagram profile !
https://www.instagram.com/childrensemorycfpedsprogram?igsh=MWQ5cHE3NXhlaWZyaw==
We recognize many of our families use instagram and will begin cross posting updates. Please follow us there and spread the word to your friends/family!

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01/12/2025

Our CF Family Education day is coming up soon! Come connect with other families and learn about cutting-edge topics! See the full agenda below and register here:
https://afasignup.formstack.com/forms/cffamilyeducationday

01/08/2025

Recently the FDA approved Trikafta for 94 additional rare CF mutations, including the N1303K mutation! Researchers here at Emory + Children’s conducted a clinical trial of Trikafta for people with the N1303K variant which was published here:
https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(24)00205-4/abstract