|
Happy Fall to All! We had a successful meeting during the Single Ventricle Investigators Meeting in Denver this month, and it was great to see so many of you in person! Many new junior faculty and leaders of all experience levels have joined ACTION, and we are excited to continue our progress in the VAD, Heart Failure, Muscular Dystrophy, and Fontan spaces. We are grateful for the engagement and collaboration from all stakeholders that continue to excel our research, quality improvement, education, and advocacy efforts. Regards,
ACTION Executive Leadership
REMINDER!!!ASAIO Abstracts Due November 27th
ISHLT 45th Annual Meeting & Scientific Sessions
April 27 – 30 | Boston, MA
ACTION Meeting information TBD
Conference Info
ASAIO 2025 - 71st Annual Conference
June 4 – 7 | New Orleans, LA
ACTION Meeting information TBD
Conference Info
ACTION Members at SVIM 2024!
Our fall meet-up was full of new ideas, innovation updates, data discussions, and strategy for 2025. We are looking forward to future meetings at CHOP, ISHLT and ASAIO next year!
Callout for Genetic Counselors!
Do you know a Genetic Counselor that would be interested in working with ACTION?
A new group is forming to help develop genetics-focused provider and patient education materials, webinars, and other genetics-related projects. Please email us if you have someone at your center we should consider for this group.
Heading into our 8th year of ACTION, our growth continues to rise across committees, projects, and workgroups. To align our meeting structure to our leadership structure, and to better engage all members of ACTION from our VAD, HF, MD and Fontan spaces, we are working behind the scenes to set up new meeting series. In the next few weeks, you will see some meetings and series canceled and new ones added to your calendars. If you have questions about what's coming through on your calendars, please email us. We will be carrying over members into new meeting series based on their indicated areas of interest. 'ACTION for All' calls will also be returning! We plan for these calls to occur quarterly, with all members of ACTION invited.
NEW!
Heart Failure Success
Patient & Family Education Handbook
This handbook is a great resource and convenient scrapbook for patients, families, and caregivers throughout their journey. It also can serve as a great resource for clinician trainees. As a first volume of this handbook, we welcome any feedback. Please email us.
UPDATED!
HeartMate 3TM LVAD Patient Education Handbook
We recently completed a refresh of the three year old ACTION patient education handbook for HeartMate 3TM LVAD patients. Now updated with updated device graphics and language. Download this new version and replace your digital copy on file! Contact your Abbott Rep for a printed version of this newly updated handbook. Note: An updated Spanish version is coming soon!
Quality Improvement Updates
Given that bleeding is a significant and frequent adverse event in the ACTION HeartMate 3TM population, we feel that adopting an aspirin-sparing antithrombosis regimen in our pediatric population may also be advantageous, without increasing risk of thrombotic events. WHAT CLINICAL SITES NEED TO DO: - Consider stopping aspirin in current patients and/or an aspirin-sparing regimen in future HM3 patient
- Simplified Clinical VAD registry now includes 2 additional data fields on CF-VAD follow up forms, and AE forms asking about aspirin
usage
- If you deem that aspirin usage is medically necessary, then complete the registry field asking “why?” so we can understand which patients may or may not benefit from aspirin in our pediatric population
Questions? Email the MARCH project team at info@actionlearningnetwork.org.
Registry Database Updates
Simplified Clinical data as of October 4, 2024
Total # Patients Enrolled 1,759
Total # Patients Enrolled 872
Total # Patients Enrolled 161
Total # Patients Enrolled 672 Meds Titration: 31
CardioMEMS: 59
Apple Watch: 10
If you need access to enter data, or have any questions please email us.
Open Positions in ACTION Centers
Johns Hopkins All Children's Hospital
St. Petersburg, FL
Looking for: VAD Advanced Practice Provider (APP) (Physician Assistant or Nurse Practitioner) The Opportunity: The VAD (ventricular assist device) APP will serve as the primary contact for the VAD Program in the Heart Institute at JHACH. The APP will see patients with ventricular assist devices during implantation, while inpatient, and in clinic. They will serve as a member of the Heart Failure/Transplant team and will collaborate with other members of the team. They will participate in quality, education, guideline review/revision, and research related to the VAD program. To Apply: Email Maria Goode
More info: See full position listing
Norton Children's Hospital – University of Louisville
Louisville, KY
Looking for: Pediatric Advanced Heart Failure and Transplant Cardiologist (Advanced training in pediatric heart failure and transplant required) The Opportunity: Join a well-established team caring for complex pediatric heart failure, transplant and mechanical support patients in both inpatient and outpatient facilities. There is a dedicated team of 3 heart failure and transplant cardiologists, 2 nurse practitioners, 3 nurse coordinators, as well as a psychologist, a licensed clinical social worker, and a nutritionist. Norton Children’s Heart Institute offers full-service congenital heart disease
care, including 18 sites of local and regional outpatient clinics, dedicated cardiac intensive care unit; complex neonatal and heart transplant surgery; pediatric ventricular assist device placement; and full-service cardiac catheterization and electrophysiology labs. Working to grow the practice of 24 cardiologists, 18 advanced practice providers, and other specially trained cardiac nursing and staff. Busy clinical practice performing more than: 250 cardiac surgeries per year, 4-10 heart transplants per year, 3-8 ventricular assist devices per year, 400 cardiac catheterizations per year. Academic position as an assistant, associate or full professor of Pediatrics at the University of Louisville School of Medicine, based on experience. Research opportunities and support available through Norton Children’s Research Institute, affiliated with
the University of Louisville School of Medicine. To Apply: Email Sarah Wilkens
More info: See full position listing
UCSF Benioff Children’s Hospital
San Francisco, CA
Looking for: Pediatric Heart Failure & Transplant Nurse Practitioner The Opportunity: The NP will work closely with the Pediatric Heart Failure & Heart Transplant Nurse Coordinator, and Administrative Assistant to care for patients requiring the breadth of inpatient and outpatient pediatric heart failure management; including mechanical circulatory assist device management, pre-transplant and post-transplant care. Specific duties include; being a contact for patients and families; medication orders and reconciliation, coordination of patient care and education, inpatient and outpatient clinical
patient history, examination and assessment, diagnosis, planning and documentation; treatment implementation, coordination and continuity of care, pre transplant evaluation and UNOS wait listing, development of practice protocols and evaluation of quality of care; education of patients, families and other health care practitioners on the disease process, treatment options, and lifestyle modification. To Apply: Official Site Email Megan Keating,
NP with questions
More info: See full position listing
|
