It has been a few months since our last newsletter. We are trying a new communication method: a “Forecast” email goes out every two weeks with important dates, meetings and resources; and newsletter, which now include data visualizations, will be distributed quarterly.
It was great to see many of you at ISHLT this past April! We are planning the Fall and Spring ACTION meetings (look for details in upcoming Forecast emails).
In other exciting news, we recently launched our updated website! Same URL with lots of great new content. We also have a new educational series kicking off in August called “In Real Life (IRL)” (registration details below). Heart failure projects are also rolling out this month to pilot sites, with a network-wide launch planned for September 2022.
As always, thank you for your continued efforts!
Montreal, Québec, Canada
- Nassiba Alami Laroussi
- Lucy Clayton
- Mary Ellen French
- Karen Harrington
- Celine Thibault
- Baruch Toledano
A New Heart, A New Community: Raylan’s Story
From the moment Raylan was born, he fought for his life. Born with cardiomyopathy, Raylan was placed on the transplant list at seven weeks old. His parents, Bonnie and Craig, could only sit and wait for answers about their baby. After agonizing challenges, numerous roadblocks, and more than a few long nights, Bonnie and Craig brought their baby home and found a new community along the way.
A big thank you to Bonnie, Craig and Raylan for sharing their story in an effort to promote advocacy, support, and awareness!
If you have a story to share, please contact us!
Check out ACTION’s new website!
Same URL, but now with a complete redesign and lots of great content to explore and share.
New features include:
- Summaries of the four patient populations we serve: Cardiomyopathy, Congenital Heart Disease, Muscular Dystrophy, and Fontan Circulatory Failure
- In-depth project overviews with data visuals
- Registry & Data enrollment numbers
- Heart of ACTION blog that includes: news, events, stories, and more
- One-stop shop for all ACTION publications
Help us celebrate the launch of this new website by sharing actionlearningnetwork.org on your social media platforms.
ACTION receives $2 million grant from Parent Project Muscular Dystrophy (PPMD)
Have you heard?? ACTION received a $2 million grant from Parent Project Muscular Dystrophy (PPMD) to expand muscular dystrophy focused research and quality improvement initiatives
The funding will provide our clinicians, researchers, parents, and patients the resources to study and understand cardiac disease and outcomes in all dystrophinopathies. The gift will allow the expansion of our DMD committee’s initiatives including:
- DMD Database Expansion
- Increase institution participation and ensure diverse representation
- Establish use of real-world data and prospective clinical trials for treatment of cardiac disease in muscular dystrophy
- Develop ACTION Patient Reported Outcomes (PRO)
- Develop educational modules for patients, caregivers, and providers
In addition to the data collection and quality improvement initiatives, My ACTION Education, will be expanded to include muscular dystrophy related materials for patients, caregivers, and providers.
See the full press release.
Improving Mobility for Patients on the Berlin Heart EXCOR®
Congratulations to Beth Hawkins, RN, MSN, FNP-C and her team at Boston Children's Hospital for developing an IV pole prototype to improve mobility in patients on a Berlin Heart EXCOR® IKUS Driving Unit.
They are working to survey nurses/PT/OT and families on how it has impacted their patient’s quality of life and ease of use.
See the full poster here.
The Fellows Stakeholder Group (headed up by Joey Spinner & Anna Joong) was started to engage 4th year HF/VAD/Transplant Fellows with ACTION. Activities have included: interesting case discussions, multiple journal clubs, and webinars featuring Berlin Heart, HeartMate 3TM, and Impella. This year the group will also complete a project that will (hopefully) result in a publication.
We are reaching out to request that you share with us the contact information for your incoming 4th year fellow(s) for next year—and any internal categorical fellows whom you think will be pursuing a future career in HF/VAD/Transplant. We would like to get them on-boarded to ACTION now so we can start planning our activities
for the beginning of the next academic year.
Please email Joey Spinner or Nikita D'Souza with names and email address.
Use the iDecide VAD Pediatric Patient Decision Aid Booklet with your patients & families. We also offer a version of the booklet in Spanish!
Use the iDecide VAD Pediatric Patient Decision Aid Infosheet with your patients & families. Scan the post-use QR code to tell us about your experience.
BSN, RN, CCRN
Children's Hospital Colorado
MS, CPNP, DNP
Columbia University Medical Center
If you know someone that deserves a little recognition, please send us details!
The chosen ACTION Members of the Month receive a special ACTION swag item — and nominators will be entered into a quarterly raffle for a special prize!
Quality Improvement Updates
Aggregate network stroke data, updated July 2022. We sustained our initial efforts, see graphs below. New interventions coming soon.
Percent of patients who had a stroke with all devices (by first implant date)
Percent of patients who had a stroke with intracorporeal continuous flow device (by first implant date)
Percent of patients who had a stroke with paracorporeal continuous flow device (by first implant date)
Percent of patients who had a stroke with paracorporeal pulsatile flow devices (by first implant date)
22 HeartMate 3TM and Berlin Heart patients have been entered in the De-Escalation Project. 8 of the 22 patients achieved de-escalation before either 1. activation for transplant, 2. completing hospital course to discharge, or 3. receiving their transplant. Achieving de-escalation means the patient was extubated, off inotropes, ambulating or age equivalent, and stated feeds. This project is designed to encourage patient stability prior to transplant. It is also an effort to encourage discharge of patients on HeartMate 3TM.
47 patients and parents told us how they’re feeling post-VAD implant.
See the results below.
Registry Database Updates
Simplified Clinical data as of 7/4/22
Total # VAD Patients Enrolled
6-mo follow-up completed:
30-day follow-up completed:
If you need access to enter data, or have any questions please email us.
Open Positions in ACTION Centers
Levine Children’s Hospital
Charlotte, North Carolina
Looking for: Pediatric Heart Failure and Transplant Cardiologist
Responsibilities: The candidate will rotate equally on Heart Transplant/Heart Failure Inpatient and Outpatient Services with shared night/weekend call. Clinical expertise with mechanical circulatory support devices is required as this candidate will be considered to become the director of mechanical support, with responsibilities in patient care, administration, program development as well as a chance to advance the strategic vision of the program as a whole, and clinical research and national committees. LCH is an active participant in PHTS and ACTION.
To Apply: To learn more and apply, see the full job posting.
Email Contact: Phillip Christofferson, Sourcing Specialist, Physician Recruitment
The Children’s Hospital of Philadelphia (CHOP)
Looking for: Advanced Pediatric Heart Failure and Heart Transplantation Fellowship at the Children’s Hospital of Philadelphia; 2023–2024 Academic Year
Responsibilities: The position includes clinical responsibilities for inpatients pre/post transplantation, participation in the evaluation and listing process, participation in donor offer acceptance and surgical planning, and acute ICU and immunosuppression management. It will also include responsibility for inpatient heart failure and MCS consultation and MCS surgical planning. Outpatient responsibilities include participation in post-transplant and cardiomyopathy clinics and clinical research projects. There will also be teaching responsibilities to medical students, residents, and fellows both in the inpatient and outpatient settings.
- Applicants who will have completed their general pediatric cardiology fellowship training prior to the start date of July 1, 2023 will be considered
- Send the completed documents to Dr. Carol Wittlieb-Weber and Sherele Rogers by July 15, 2022.
Email Contact: Carol
Wittlieb-Weber, MD Sourcing Specialist, Physician Recruitment
University of Minnesota
Looking for: Pediatric Cardiology—Director Heart Failure/Transplant (Assistant, Associate or Professor—Academic Track)
Responsibilities: The Department / Division is seeking an individual with strong interest in Pediatric Heart Failure, Mechanical Circulatory Devices and Heart Transplant to lead our Heart Failure/Transplant program. Participate in pre- and post-transplant evaluation and treatment of cardiomyopathies and heart failure of different etiologies. Academic time protected to pursue scholarly work with a goal of developing collaborative or independent, research. The program has a long tradition in cardiac transplant and has recently recruited two surgeons with strong expertise in this field.
To Apply: To learn more and apply, see the full job posting.
Email Contact: Connie Franklin, Physician Recruiter
Monroe Carell Jr. Children’s Hospital at Vanderbilt
Looking for: 4th Year Advanced Fellowship in Pediatric Heart Failure and Heart Transplantation
Responsibilities: Clinical responsibilities include the care of inpatients and outpatients both pre- and post-transplant, decisions surrounding the use of mechanical circulatory support and subsequent management, transplant evaluations and listing decisions, donor calls and donor acceptance decisions, post-operative management, and advanced heart failure consultations. The 4th year fellow will be expected to attend outpatient transplant clinics as well as weekly cardiomyopathy clinics. Participation is clinical research is strongly encouraged and will be well-supported.
To Apply: Email the following 4 items to Justin Godown,
MD: 1. Updated CV, 2. Three letters of recommendation (addressed to Justin Godown), 3. A brief personal statement, and 4. Vanderbilt GME application
Email Contact: Justin Godown, MD, Associate Professor, Pediatric Cardiology & Associate Director of Pediatric Heart Transplantation
Columbia University/Morgan Stanley Children’s Hospital
New York, NY
Looking for: 4th Year Advanced Fellow in Pediatric Heart Failure/Transplant
Responsibilities: The 1-year advance fellowship position starting July 1, 2023 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.
To Apply: Send a CV, three letters of recommendation, and a brief personal statement to Marc Richmond or Warren Zuckerman by September 2, 2022.
Email Contact: Marc Richmond, MD, MS, Associate Medical Director, Program for Pediatric Cardiomyopathy, Heart Failure and Transplantation