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Summer is upon us, and it is hard to believe we are only a few months away from CNOC's 12th Annual Scientific Sessions! The Program & Meetings Committee has curated an incredible speaker lineup for this year, with content ranging from the fetal period to older adulthood, and from basic science to quality improvement and advocacy work. There is truly something for everyone, and we can’t wait for the thought-provoking, creative inspiration as well as the connection-building with old friends and new colleagues, which form the cornerstones of our annual CNOC meetings.
Recognizing that we accomplish more when we work together, CNOC continues to build connections with organizations across Cardiac Networks United (CNU). We are partnering with the Pediatric Cardiac Intensive Care Society (PCICS) to present a Cardiac Neurodevelopment preconference at their annual meeting in San Diego on November 14 (pcics.org). CNOC will also present about our registry and research opportunities alongside other CNU data registries at the Additional Ventures Single Ventricle Investigator Meeting in Denver on October 18 (www.additionalventures.org). We know many of our incredible CNOC members are actively involved in other organizations with intersecting areas of interest – please don’t hesitate to reach out to CNOC Co-Chairs at any time with ideas or opportunities for collaboration and learning from one another!
We are thrilled that CNOC is becoming an increasingly global organization. We’d like to extend a special welcome to our newest Institutional Members:
- Sindh Institute of Urology and Transplantation
- Sydney Children’s Hospitals Network
- Children’s Health Queensland
Taken together, the synergistic, team-oriented culture of CNOC is truly something to be proud of. We can’t wait to see you in St. Louis!
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CNOC TALK - CNOC'S SECOND PODCAST
"Health Equity in Cardiac Neurodevelopmental Care"
Join your hosts, Caroline Lee MD and Karli Negrin MS CCP SLP, as they chat with three leaders in the CNOC Diversity & Inclusion Special Interest Group (SIG) - Dr. Elizabeth Willen, Dr. Sonia Monteiro and Dr. Faridis Serrano - about the importance and challenges of diversity, equity and inclusion when caring for children with congenital heart disease. Listen here, and be sure to subscribe for future episodes.
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GREETINGS FROM ST. LOUIS
As Diamond Hosts of CNOC’s 12th Annual Scientific Sessions, we at St. Louis Children’s Hospital and Washington University in St. Louis are pleased to invite you to join us on September 12-14, with a special preconference on September 11. We have an exciting program planned and look forward to sharing our city’s charm and culture.
The Preconference on September 11 has been organized in partnership with the Adult Congenital Heart Association to discuss the latest on neurodevelopmental and psychosocial care for adults living with CHD.
The scientific sessions include cutting-edge science, clinical approaches, quality improvement, and advocacy opportunities. Some of the key sessions:
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Fetal and Neonatal Transitions: Considerations for Neurodevelopmental Care with featured presentations from Shabnam Peyvandi, Cindy Ortinau, and Caroline Lee.
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Turning Ideas into Action—Two sessions dedicated to novel and exciting neurodevelopmental interventions from a variety of institutions.
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Different Faces of Stress in CHD with talks from medical providers who have personal experiences with CHD
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Engagement and Advocacy through CNOC with an exciting presentation from Mark Roeder, ACHA CEO, and Deanna Barch, an expert on the impact of poverty on the developing brain and neurodevelopmental outcomes.
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Breakfast Session on Interactive Registry Updates with a presentation by Andrew Van Bergen to learn more about the registry and how to use its quality metrics.
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Breakout Sessions on Research and Quality Improvement within CNOC, Inpatient Developmental Care Teams, Outpatient Neurodevelopmental Follow-up Programs, and Storytelling and Lived Experiences from patients and their families.
New this year: presentation of the inaugural Cardiac Neurodevelopmental Advocacy and Engagement Award.
The Celebration Dinner will be on September 12 at the Missouri Botanical Garden, an enchanting oasis nestled in the heart of St. Louis. Join us for a lovely summer evening celebration amidst vibrant blooms and tranquil beauty!
Local Vibes: St. Louis is a diverse and vibrant city centrally located in the US, known for its history, cultural institutions, sports, great restaurants, beer culture and music scene!
Where to Stay: The conference hotel is the historic Royal Sonesta Chase Park Plaza, within walking distance to the conference center on the Washington University School of Medicine campus. The hotel is a block away from Forest Park, a beautiful urban park and home to several renowned (and free!) institutions, including the St. Louis Art Museum, Missouri History Museum, St. Louis Science Center, and St. Louis Zoo.
This conference is for ALL who are involved in the neurodevelopmental care of patients with congenital heart disease. We especially extend a warm welcome to people with CHD, their parents and caregivers, along with a specially reduced registration rate of $50 that includes the Preconference Workshop.
Follow CNOC on Instagram @cnoc_thrive for more Scientific Session updates on St. Louis sites, activities, and food! Meet us in St. Louis!
From the Cardiac Neurodevelopmental Team at St. Louis Children’s Hospital and Washington University in St. Louis.
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WELCOME NEW STANDING COMMITTEE LEADERSHIP
We are immensely grateful to all the important work of our Standing Committees. Please join us in welcoming new leadership roles! Welcome Laurence Beaulieu-Genest MD FRCPC as our new Learning and Resource Committee Chair, Richard James MSLIS as our new Publications Committee Chair and Anne Gallagher PhD as our new Publications Committee Co-Vice chair.
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Dr. Beaulieu-Genest
CHE Ste-Justine
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Mr. James
Nemours Children's Health
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Dr. Gallagher
Université de Montréal
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NEW TRANSITIONS: DIVERSITY AND INCLUSION SIG
Thank you Sonia A. Monteiro MD for serving in the role of Co-Chair of our Diversity and Inclusion SIG and a big welcome to Alexander Tan PhD, joining Elizabeth J. Willen PhD as the new Diversity and Inclusion Co-Chair. Please contact Elizabeth or Alexander if you have an interest in joining the Diversity and Inclusion SIG.
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CNOC STAR - MEET RICHARD JAMES MSLIS | |
Richard has been an active member of the congenital heart disease community since his child, Lou, was diagnosed with hypoplastic left heart syndrome at 2 weeks of age in January 2000. Lou is now 24 and flourishing. They graduated college a couple of years ago and have been exceptionally fortunate with their cardiac health. They have had very few physiological limitations enabling them to play high school sports, engage in physically taxing activities, and work on a farm, at a summer camp, and currently as a carpenter. While so very lucky that Lou’s cardiology outcomes have been good, like many of their single-ventricle peers, their mental health was much more of a challenge especially during adolescence. | |
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Through his personal experience with CHD through his child, Richard has become an active member of the CHD community. Out of an interest in how trauma-informed care practices might mitigate the impact of the surgical and hospitalization experience of neonates and their caregivers, and ways in which centers could support whole-family mental health by developing best practices for supporting parents and caregivers, Richard first came to work with the National Pediatric Quality Improvement Collaborative in the early 2000s. He then became a member of CNOC in 2018, when he first applied to become a member of the Publications Committee as one of the parent/patient representatives. He has also been active in his local chapter for Mended Little Hearts as well as serving as a member of the Executive Leadership Team for the Fontan Outcomes Network. | |
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By profession, Richard has been a librarian for more than 20 years and a medical librarian for the past 10 and has used his experience as a caregiver to a person with a chronic health condition to lead his vocational interests. His strong expertise in literature review methodology, in particular, as well as general experience in navigating academic publishing and peer review, combined with his lived experience and family-centered perspective, has enabled him to make tangible and useful contributions to the work of CNOC and the other research collaboratives. “The publications committee seemed like an obvious fit for me and I’m really honored to be able to lead this group as it helps our researchers to polish and refine their manuscripts prior to submitting them for publication.”
Thank you Richard for your expertise and contributions to CNOC!
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Lou with Richard's grandcat | |
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SHARE YOUR SCIENCE
Exciting papers and national guidelines recently released.
Opotowsky AR, Khairy P, Diller G, Kasparian NA, Brophy J, Jenkins K, Lopez KN, McCoy A, Moons P, Ollberding NJ, Rathod RH, Rychik J, Thanassoulis G, Vasan RS, Marelli A. Clinical Risk Assessment and Prediction in Congenital Heart Disease Across the Lifespan: JACC Scientific Statement. J Am Coll Cardiol. 2024 May 28;83(21):2092-2111. https://pubmed.ncbi.nlm.nih.gov/38777512/
Elgersma KM, Engel ML, Ramel SE, Davis JA, McKechnie AC, Pfister KM. Human milk, breastfeeding, and early neurodevelopmental outcomes for infants with critical CHD. Cardiol Young. 2024 May 13:1-9. https://pubmed.ncbi.nlm.nih.gov/38738385/
Butler SC, Carroll K, Catalano K, Atkinson C, Chiujdea M, Kerr J, Severtson K, Drumm S, Gustafson K, Gingrasfield J. Sleeping Safe and Sound: A Multidisciplinary Hospital-wide Infant Safe Sleep Quality Improvement Initiative. J Pediatr Health Care. 2024 Apr 19:S0891-5245(24)00048-8. https://pubmed.ncbi.nlm.nih.gov/38647508/
McCormick AD, Puri K, Asaki SY, Amdani S, Chowdhury D, Glickstein JS, Tierney S, Ibeziako P, Cousino MK, Ronai C. Mental Health Care for Children with Heart Disease and Their Families: Practical Approaches and Considerations for the Pediatric and Pediatric Cardiology Clinician. Pediatr Cardiol. 2024 May 16. https://pubmed.ncbi.nlm.nih.gov/38753034/
Want to share your science? Members submit here!
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