NAPRTCS

Attending @ASNKidney #KidneyWk? Come check out our @NAPRTCS1 posters! First, @jodismith0820 will present information from the #Cystinosis Registry Next, @Vikas_R_D shares initial findings from the #ddcfDNA project Details below. We hope to see you there!

That's a wrap the for 2024 @NAPRTCS1 Fall Virtual Meeting. We look forward to seeing everyone again next year!

The @NAPRTCS1 Fall Virtual Meeting starts now! We have over 175 registrants from 58 centers, 3 collaborative groups, and 8 of our partner companies. Today's meeting will feature some exciting announcements and updates on our current and upcoming projects.

The @NAPRTCS1 Virtual Fall Meeting is less than 2 weeks away! Please join us to learn more about our ongoing projects and future plans. Meeting attendance is free and open to the entire academic #PedNeph community. Register here: tinyurl.com/5bxm2nns

The @NAPRTCS1 team is excited to share that we have 4 abstracts accepted for @IPNA_Congress on the subjects of #cystinosis #dialysis and #transplant. More details to come. We look forward to seeing everyone in Cape Town! #IPNA2025

Want to learn more about the @NAPRTCS1 #Cystinosis Registry? Join us for a webinar on June 7th at 2pm EDT. Topics include new PRO measures and a transition needs assessment. Attendance is open to the entire academic medical community. Register here: tinyurl.com/43erxce5

That’s a wrap! Thank you to everyone who attended #NAPRTCS2024. We look forward to seeing you again this fall. Save the date for our next meeting in September!

Up next, @Sara_NAPRTCS spotlights centers that have excelled in the past year. We are so grateful for the hard work done on the @NAPRTCS1 registry and clinical trials by all of our centers. Need help getting caught up? We’re here to help! #NAPRTCS2024

Tune in now to hear @funsocdoc and @meredithneph present an overview of our current and upcoming clinical trials. The @NAPRTCS1 Clinical Trials Committee works with our industry partners to plan and implement studies to help improve the health of pediatric #CKD and #ESKD patients

What do you want to know about @NAPRTCS1 and how do you want to hear about it? The Communication Committee is hard at work keeping you informed through newsletters, status reports, webinars, and social media. Have suggestions for improved communication? Let us know! #NAPRTCS2024

Nathan Paziuk of @Modern_Craft provides an update from the @NAPRTCS1 IT Committee. They continue to work on ways to reduce the burden of data entry. Recent work focuses on using AI for data extraction. #NAPRTCS2024

Taylor House of @WiscPediatrics presents information about her upcoming project investigating communication around kidney transplant preparation directed at adolescent and young adult patients. #NAPRTCS2024

The @NAPRTCS1 Patient and Family Advisory Council is looking for new members. Pediatric patients ≥ 18 years impacted by #CKD & #ESKD and their families are eligible to join. Please share with your patients so they have the opportunity to help guide our efforts #NAPRTCS2024

Next up, Ari Pollack of @seattlechildren shares information about Kids CoLab! This multicenter study looks at cooperative decision making in the adolescent #CKD and #ESKD population. The project will engage patients, caregivers, and clinicians. #NAPRTCS2024

Up next, @jodismith0820 provides an update on the @NAPRTCS1 #Cystinosis Registry. The registry now includes data on 106 participants with up to 5 years of follow up so far. We’ll be making an announcement about a new endeavor so make sure to tune in! #NAPRTCS2024

Join now to hear @Vikas_R_D provide an update on the dd-cfDNA project. In the last 2 years, centers have entered over 650 forms on 260 unique participants! Participation is open to new centers and data entry is compensated. #NAPRTCS2024

Eric Benz of @ChildrensColo and Ankana Daga of @BostonChildrens present two upcoming studies of #SDOH in the #Transplant and #Dialysis registries that will be completed in partnership with @hospitals4kids

The @NAPRTCS1 #Benchmarking reports a valuable source of QI data for centers. @IsaAshoor1 presents a proposed opportunity to use the information to receive ABP MOC Part 4 Points

First up, @jodismith0820 gives an update from the @NAPRTCS1 Registry Committee. The registry continues to grow with 54 centers actively entering data and over 35,000 enrollments! #NAPRTCS2024

Happening now! The @NAPRTCS Fall Meeting welcomes over 145 attendees from 61pediatric nephrology programs! Follow us for updates throughout the meeting. #NAPRTCS2024