|
Dear Community, 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! Our next in person meeting will be the Fall 2023 ACTION Meeting at the International Pediatric VAD and Heart Failure Summit in September. See more summit info below and stay tuned for meeting details in upcoming Forecast emails. Thank you for your continued efforts! Regards,
Join us as we talk with Emma Rothman, author of Things My Therapist Doesn’t Want Me to Say: Ten Years Post Heart Transplant!Thursday, August 3rd at 1:00 PM ET | Virtual (Zoom)
We will be discussing everything from her patient journey, to advice for current and/or future transplant patients. Please join us even if you have not read the book! See more info | Buy the book
Book Club with Emma Rothman
Things My Therapist Doesn’t Want Me to Say: Ten Years Post Heart Transplant!
Thursday, August 3 | 1:00 PM ET | Virtual
More info | Register
International Pediatric VAD & Heart Failure Summit
September 22–23 | St. Louis, MO
More info | Register
SAVE THE DATE
2023 ACTION FALL MEETING
Plan to Practice
Our Role in Clinical Trials
Thursday, September 21
St. Louis, MO
(before the VAD Summit—see above)
12–5 PM: ACTION Fall Meeting
5:30–6:30PM: Berlin Heart Active Drive Trial PI Meeting
Eric P. Newman Education Center
320 S Euclid Ave, St. Louis, MO 63110
EPNEC Center–Great Room B RSVP by July 31st to receive an ACTION T-Shirt
|
Inova L.J. Murphy Children's Hospital Falls Church, Virginia - Jason Goldberg, MD, MS
- James St. Louis, MD
- Lucas Collazo, MD
- Ilias Iliopoulos, MD
- Kathleen Donnelly, MD
- Jeremy Lamkin, MD
- Megan Tzeng, MD
- Mahsheed Taeb, DO
- Jessica Smith, RN
- Michelle Schreffler, RN
- Kristine Lewis, RN
- Megan Kramer, RN
- Emily Potter, RN
- Leslie Ju, RN
- Mechelle Fleischer, PA
- Glenn Bailey, Jr., PA
- Kristen Barbieri, PA
- Fiona Baustein, NP
- Kelly Ferran, NP
- Lauren Hancock, NP
- Katie Kauffman, NP
- Louis Seay, NP
- Joyce Vamja, NP
- Gail Green
Children's Hospital New Orleans
LCMC Health
New Orleans, Louisiana - Tamara Bradford, MD
- Stephanie Bush, NP
- Marla Johnston, RN, MSN
Helen De Vos Children’s Hospital
Grand Rapids, Michigan - Jean Ballweg, MD
- Andrea Katt, RN
|
International Pediatric VAD
& Heart Failure SummitSt. Louis, MO
Thursday, September 21Plan to Practice – Our Role in Clinical TrialsACTION will host the Fall 2023 meeting for anyone who would like to attend. See agenda below and RSVP before July 31st to receive an ACTION t-shirt. - 12:00–5:00 PM ACTION Meeting (lunch will be provided)
- 5:30–6:30 PM Berlin Heart Active Driver Trial PI Meeting
Location: Eric P. Newman Education Center – Great Room B
320 S Euclid Ave, St. Louis, MO 63110
RSVP by July 31st to receive an ACTION t-shirt!
Friday & Saturday, September 22–23, 2023International Pediatric VAD & Heart Failure SummitThe Heart Center at St. Louis Children’s Hospital and Washington University School of Medicine are excited to invite you and your colleagues to the return of the International Pediatric VAD and Heart Failure Summit. This event will be held in the Eric P.
Newman Education Center on the campus of the Washington University Medical Center. This summit is presented in collaboration with Boston Children’s Hospital, Stanford Medicine Children’s Health, Cincinnati Children’s, The Hospital for Sick Children Toronto, Children’s Hospital of Los Angeles, and Texas Children’s Hospital Houston. For more information, including agenda, faculty, poster submission, lodging and registration, visit: https://cme.wustl.edu/go/vad2023
Friday, September 22Berlin Heart will be hosting an evening dinner reception at the Chase Park Plaza Hotel, Friday, Sept. 22, in celebration of the 25th anniversary of the availability of the Berlin Heart in North America.
LOCATION:
Cincinnati Children's
ACTION ROLE:
ACTION Summer Intern (& past patient)
You may recognize her as our homepage cover girl on the actionlearningnetwork.org website, but now all grown up, Sam is pursuing a biology and pre-med undergrad degree at Miami University. She wants to become a cardiologist to be able to deliver the same quality care she received as a patient. ACTION is lucky enough to have her working for the network this summer as an intern focusing on heart failure data entry, as wells other projects. Sam was generous enough to write up her patient story to share. Check it out!
Meet Our Newest ACTION Team Member!
Ben joined ACTION in July with a master’s degree in biostatistics. He will be working as a Sr. Data Analyst.
Why did you want to join ACTION?
The power of data in the medical field is something that I am very passionate about, and ACTION was the perfect opportunity to join a team of talented individuals harnessing this power to improve patient care and make a positive impact on the lives of patients and their families. What’s your favorite part about ACTION?
My favorite part about ACTION is the strong culture of collaboration, where every member of the team feels like family, fostering a supportive and inspiring environment. Working alongside such a talented and passionate team makes every day a rewarding and enriching experience. What are some things that you enjoy doing outside of work?
Outside of work, I like to stay active by running and rock climbing. I also enjoy spending time with family and friends, as well as traveling to new places.
Meet Our Littlest ACTION Member!
We couldn't be more excited that Lauren Smyth (Director of Operations, ACTION) is back from maternity leave! Benjamin Richard Smyth, Jr. (“Benny”) was born April 8, 2023. He weighed in at 6lbs. 11oz. He is a healthy, happy baby!
We are excited to announce our collaboration with Julian Lerner! You may recognize Julian from the hit show "The Wonder Years" on ABC -- he learned about ACTION through a friend and felt a strong connection to our mission. He will be working with ACTION to raise awareness and develop education to keep kids' hearts healthy. Check out our Instagram (@action4hf) and Julian's page (@julianlerner) for exciting details. Stay tuned every Thursday on Instagram for more! #ACTIONxJulian #PedsHF #PedsVAD #HFAwareness #takeACTIONthursday
ASAIO Awards – 68th Annual Conference
Congratulations to Hari Tunuguntla on being selected for the 2023 ASAIO Paul S Malchesky ASAIOfyi – for young innovators Fellowship Award.
Congratulations to Sharon Chen and authors of Over 100 Fontan Patients on Ventricular Assist Device Support: An ACTION Update for receiving two awards at the 2023 ASAIO conference: ASAIO Top Pediatric Award and the ASAIO Kolff Award Runner Up.
Welcome FY24 ACTION Fellows!
The ACTION Fellows group, led by Drs. Anna Joong & Joseph Spinner, is planning sessions including but not limited to: - Transition from Fellow to Attending Tips (Interview/Finance)
- Device specific learning sessions
- Fellow lead research projects
- Conference meet ups
- Journal clubs
- Donor decision presentations
- and more!
Are you, or someone you know, a 4th year HF/HTx fellow (or a cardiology or CICU fellow interested in HF/HTx)? Are you Interested in joining the fellows group? Email us!
SGLT2 InhibitorsOur new Heart Failure Success SGLT2 Inhibitors info sheet for patients, caregivers, and families! This one-pager explores the following:
• What is an SGLT2 inhibitor?
• How does the medicine help?
• Are there side effects?
• What are some examples?
*Attention All Active Driver Trial Participants!*
Check out the newest Berlin Heart
EXCOR® Active one page summary (OPS). This one-pager explores device pump settings, system preferences, pump optimization, power sources, accessories, alarms and potential emergencies.
Quality Improvement Updates
Aggregate network stroke data, updated July 12, 2023.
We sustained our initial efforts, see graphs below. The leaders are working on a High-Risk bundle intervention that will be rolling out for testing soon!
99 HeartMate 3TM and Berlin Heart patients have been entered in the De-Escalation Project. 63 of the 99 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.
The discharge rate for HeartMate3TM patients is improving, both across our quality improvement cohort and the network overall! We are working on a new Discharge Bundle for HeartMate 3TM patients that will be rolling out soon – stay tuned!
Patients and parents told us how they’re feeling post-VAD implant.
255 surveys were completed from 6/8/21 through 6/30/23.
See the Visual Analog Scale results below.
Registry Database Updates
Simplified Clinical data as of July 12, 2023
Total # Patients Enrolled 1,314
Total # Patients Enrolled 275
Total # Patients Enrolled 86
Total # Patients Enrolled 250 Meds Titration: 17
CardioMEMS: 24
Apple Watch: 7
If you need access to enter data, or have any questions please email us.
Open Positions in ACTION Centers
UT Health San Antonio, Joe R. and Teresa Lozano Long School of Medicine
San Antonio, TexasLooking for: Pediatric Heart Transplant and Heart Failure Cardiologist
(Full-time medical director of pediatric heart failure, transplant and mechanical circulatory support to develop a pediatric heart failure and heart transplant program.)
Responsibilities: The ideal candidate would have experience in pediatric heart failure and transplant and the desire to build and grow a heart failure program. The position encompasses responsibilities in patient care including heart failure, pre- and post-transplant and VAD patients, all forms of mechanical circulatory support and ECMO and will work closely with the University Health Transplant Institute. Preference will be given applicants qualified to serve as an Organ Procurement and Transplant Network Primary Pediatric Heart Transplant Physician. To Apply: To learn more and apply, see the full job posting. Requisition ID 22000298.
Email Contact: Ginnie Abarbanell, MD, Professor & Chief, Division of Pediatric Cardiology
|
