Registry Database Updates

The Pulse — October 2023

Happy Fall to All!
We had a successful meeting in St. Louis during the International HF/VAD Summit, and it was great to see so many of you in person! We brainstormed new ideas for QI/Research projects, clinical trials, education projects, advocacy efforts, and ways to improve data collection and project participation. We also played ACTION Trivia — did you know ACTION now has 66 sites in North America and has 27 manuscripts published since 2019? We are starting to plan for our next in-person meeting, which will be at CHOP in February 2024. Details to follow soon…

The Pulse — July 2023

We hope you are enjoying your summer vacations and finding time to soak up the longer sunnier days of the year with your families!
Looking ahead to the Fall, we are working with several committees to prepare new projects for launch. Some of these projects include a new Discharge Bundle for VAD patients and new interventions for the Fontan Referral project. We have also been working diligently to increase enrollment and data entry in our heart failure and muscular dystrophy registries. This critical data will help support the development of future projects. We appreciate everyone’s efforts throughout the busy summer to keep our important ACTION work moving along!

The Pulse — April 2023

It was great to see many of you at ISHLT this month! Congratulations to the many authors and co-authors involved in the ACTION abstracts shared at ISHLT (details below).
We had over 100 members at the ACTION meeting who worked together to align Adverse Event definitions and learn about our new initiative—ACTION Global. The launch of ACTION Global is an expanded effort to involve more international sites with an end goal of improving patient outcomes globally by sharing data and practices around the world.

The Pulse, January 2023

The Pulse — January 2023

Happy Fall! We are looking forward to seeing you virtually during our Fall Meeting on Tuesday, November 8, from 1–5pm ET. Registration details are included below.
We have had a busy couple of months since our last newsletter in July, including the pilot launch of the Heart Failure registry, a successful Fontan Referral design meeting, and reaching over 1,000 patients entered into our VAD Registry. Join us for our Fall Meeting to see what’s coming for the rest of 2022!

The Pulse - October 2022

The Pulse — October 2022

Happy Fall! We are looking forward to seeing you virtually during our Fall Meeting on Tuesday, November 8, from 1–5pm ET. Registration details are included below.
We have had a busy couple of months since our last newsletter in July, including the pilot launch of the Heart Failure registry, a successful Fontan Referral design meeting, and reaching over 1,000 patients entered into our VAD Registry. Join us for our Fall Meeting to see what’s coming for the rest of 2022!