Dear Community,
This month we received news that the HVAD™ System is being withdrawn from the market, leaving a gap in pediatric care. Upon receiving this news, ACTION had a network-wide call to understand the full breadth of this issue. Based upon that input, we have had conversations with both Medtronic and the FDA. While the final disposition of this decision and how it will be implemented remains indeterminate, there is a silver lining in these events. ACTION has been able to serve as a cohesive voice for the pediatric community in this matter, and as a result, the pediatric perspective has been more prominently heard. The withdrawal of the HVAD™ System is undoubtedly a loss for children, but this is at least partially offset by the maturation of ACTION as a platform for pediatric advocacy. In the coming months, we will continue to explore this role for ACTION and will seek to blunt the impact of the HVAD™ System withdrawal.
Regards,
Use of Ventricular Assist Devices in Neuromuscular Disease
Thursday, July 8, 2021
4:00 PM Eastern
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Moderator
Carol Wittlieb-Weber, MD
Children's Hospital of Philadelphia
Featured Presentations
Case Presentation
Sabrina Law, MD
Morgan Stanley Children’s Hospital of New York Presbyterian
ACTION Data
Deip Nandi, MD
Nationwide Children’s Hospital
Expert Panelists
Chet Villa, MD
Cincinnati Children’s
Linda Cripe, MD
Nationwide Children’s Hospital
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Please submit any questions that you would like for our presenters to discuss on the registration page.
Please register by July 7, 2021. Registration is free and open to anyone interested in participating. To join us, click the link below:
For more information or upcoming topics visit our Learning Session page.
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New CentersUniversity of Wisconsin, American Family Children's Hospital
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Check it out!
New Protocols
The ACHD/HF Awareness & Fontan Committee released a new protocol for ACTION, in conjunction with the Harmonization Committee. The Fontan Post-VAD Management Protocol is now available for clinicians on Basecamp!
Feedback or suggested edits for this document? Email: Lauren Smyth
This committee is also going to begin harmonizing PLE protocols from ACTION centers. If you have a protocol or guideline to share, please email it to Lauren Smyth by 7/15/21. If you would like to work on this project, please email us to be added to the ACHD/HF Awareness & Fontan Committee.
Lights, Camera, ACTION!
A note from our friends at ABBOTT
Dear ACTION Members,
We at Abbott are hoping to talk with your HeartMate 3 patients and their families. With the expanded HeartMate 3 pediatric labeling we would love to add pediatric patients to our growing Abbott patient ambassador community. As a Heartmate ambassador, patients and their families have the opportunity to support and share experiences with others who have or are considering advanced heart failure treatment options. We are also looking for HeartMate 3 patients interested in sharing their story more broadly with others through videos, images and written materials.
If you have a patient potentially interested, we would love to start with a conversation and answer any questions you or your patient’s family may have. Please reach out to Rebecca MacDonald to learn more about this opportunity.
ACTION Leadership Training
ACTION is developing a year-long leadership training program that is slated to launch in October 2021. A call for applications will be going out soon and will be open to all clinical members of ACTION. We are excited to improve outcomes for patients and families with leaders creating leaders. Stay tuned!
Quality Improvement Updates
Discharge Project
The next Discharge Committee meeting will take place on July 7, 2021. We will continue discussing the scope and next steps of the project direction. In the meantime, please continue to test the Flight Plan and Journey Map, and enter data into REDCap on any patients who have been discharged or transferred to the floor.
Stroke Project
The next M&M-type meeting will be held on July 1, 2021, and Cincinnati Children’s will present a case. The stroke strategy team has been discussing the next focus to drive down stroke rates, and believe it is important to better understand how pre-operative imaging plays a role. Details for new stroke data collection in REDCap will be coming soon!
Telehealth Project: now called the Medication Titration Project
The project focus around optimizing and uptitrating medicines for heart failure patients is underway. The next team meeting is on July 14, 2021 to continue to design the project. For teams interested in participating, a survey to collect baseline data will be coming soon.
Heart Failure Project
Teams continue to test the two interventions: a communication checklist and a discharge plan. We are aiming to reduce length of stay for heart failure patients admitted to the hospital, as well as decrease readmissions. The next meeting will be on July 27, 2021. Please continue to enter data into the enrollment REDCap for all heart failure patients. Please see the NEW Heart Failure Data Entry infographic to know when and where to enter data for this project.
Registry Database
Updates
Volunteer to join the Adjudication Committee!
The adjudication process is to ensure accurate ascertainment and categorization of major events. By conducting a quarterly meeting, our adjudication committee reviews major events and corrects any data or information. Having accurate data allows our network to learn from one another and provide the best care for our patients. Having access to our network’s precise data allows our members to write different publications. In addition, the data is shared with the FDA for various devices under the labeling approval process and is also analyzed for critical research questions.
Our ACTION team consist of 800+ members and 38 active sites. The adjudication review committee consist of only 13 members. On average, there are 50 events to adjudicate per quarter. Our goal is to accept additional volunteers into the adjudication committee to help with the responsibility of reviewing the quarterly events and providing accurate updates to the data. If you are interested in joining the Adjudication Committee, please contact action.dcc@cchmc.org!
Our 8th round of adjudication meetings is taking place July 20th & 29th. Thank you for the continuous support to make it possible.
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VAD Registry Updates
ACTION DCC is currently working with the leadership to update Simplified Clinical fields in the CRFs. Stay tuned for more updates.
Open Positions in ACTION Centers
Columbia University Medical Center/NewYork-Presbyterian
New York, NY
Looking for: 4th Year Advanced Fellow in Pediatric Heart Failure/Transplant/MCS
Responsibilities: Columbia University Medical Center (CUMC)/Morgan Stanley Children’s Hospital of New York is now accepting applications for advanced fellowship training in pediatric heart failure/transplantation/MCS for the 2022-2023 academic year. Applicants who will have completed their general pediatric cardiology fellowship training prior to the start date of July 1, 2022 will be considered. The heart failure/transplant program at CUMC consists of six heart failure/transplant cardiologists led by interim directors Dr. Marc Richmond and Dr. Warren Zuckerman, four cardiac surgeons led by Dr. Emile Bacha, and a multi-disciplinary team that includes five nurse practitioners, two pharmacists, a social worker and a nurse coordinator. Our transplant program has performed over 600 transplants with a recent average of approximately 25 transplants per year. In addition, we have an established MCS program led by Dr. Sabrina Law, offering a variety of temporary and durable devices. The program has recently provided MCS to approximately 15 patients per year, including bridge-to-transplant in complex CHD patients and destination VAD therapy.The position will include clinical responsibilities for in-patients before and after transplantation, participation in the listing process and discussions, participation in donor offer acceptance and surgical planning, acute ICU and immunosuppression management of post-transplant patients, as well as heart failure consultation. It will also include participation in post-transplant and cardiomyopathy clinics, as well as clinical or basic science research projects.
To Apply: Send a CV, three letters of recommendation and a brief personal statement to either Marc Richmond or Warren Zuckerman by Sept. 3, 2021.
Email Contact: Marc Richmond & Warren Zuckerman, Interim Co-directors, Program for Pediatric Cardiomyopathy, Heart Failure and Transplantation
