We have had a very busy summer and fall so far culminating in CNOC's 12th Annual Scientific Sessions held in St. Louis. The Scientific Sessions were a hit with a record number of attendees! It was a chance for our community to come together and hear about all the wonderful work being done to optimize neurodevelopment among our CHD patients. We heard from patients, families, and our slate of multi-disciplinary experts—we are so appreciative of everyone’s participation in the meeting. Please read on to hear details and recap all the great memories we made! We would like to give a special thank you to our Program and Meetings Committee leads, Amanda Shillingford and Andrea Smith, as well as our local organizers, Caroline Lee and Cindy Ortinau. They all put in an extraordinary amount of time and effort to pull off this wonderful meeting. 

In other exciting news, CNOC just held elections for our Steering Committee members. We are pleased to announce the following individuals in their new roles on the Steering Committee: Samantha Butler PhD and Caitlin Rollins MD as Co-Vice Chairs, Sarah Kelly PsyD as Secretary, Anjali Sadhwani PhD as Treasurer, Sherill Caprarola MD and Bruna Schneider PsyD as Members-At-Large, with Nadine Kasparian PhD and Cynthia Ortinau MD transitioning to Co-Chairs. 

Both of us are incredibly grateful to have had the opportunity to serve as your Co-Chairs over the last two years. We are proud of the growth we have witnessed, including our ongoing expansion to international sites. Our community has come together to establish this incredible collaborative and build CNOC's Clinical Registry, providing a unique opportunity to study and track developmental outcomes in our patients. We look forward to seeing the rigorous research and quality initiatives that utilize this registry with the goal of optimizing developmental outcomes for all patients with CHD.

Please read on for exciting announcements and updates from our CNOC community. 

With gratitude,

What a beautiful week in St. Louis for CNOC's 12th Annual Scientific Sessions, packed full of learning opportunities with multiple session talks, breakout sessions, and 80+ poster presentations! We were pleased to partner with ACHA for our Preconference Workshop to provide discussions on neurodevelopmental and psychosocial care for adults living with CHD because, as Adam Cassidy PhD so eloquently stated, “How things turn out for [patients] in adulthood is kind of the whole point.” 

We were so honored to present Samantha Butler PhD with CNOC's Advocacy and Engagement Award. Listening to her dedicated commitment to hearing the voices of our most vulnerable infant patients makes it clear why she was chosen as the inaugural winner of this award. Below left.



Celebratory congratulations to Robert Clancy MD on being selected as the recipient of the 2024 Newburger-Bellinger Cardiac Neurodevelopmental Award. Dr. Clancy delivered an engaging talk discussing the importance of continuous monitoring EEG before ruling out that postoperative neurological complications have occurred in CHD patients. He is pictured with some former recipients of this prestigious award (missing Caren Goldberg MD attending virtually). Below center.

The Oral Abstract Presentation session highlighted the diversity and all the amazing work of CNOC community providers. Congratulations to Karli Negrin MS CCC SLP who presented important work completed by the Cardiac Newborn Neuroprotective Network (CNNN) Special Interest Group which was chosen as the People’s Choice “Best of the Best” abstract. Below right.

CNOC is not possible without our patients. Thank you to the patients, families, and supporters who attended and presented at this years’ meeting. Your stories highlight the reason so many of us continue the work we do!

So many opportunities for fun and networking were had in St. Louis! We thank our Program and Meetings committee led by Amanda Shillingford MD and Andrea Smith BSN as well as our Diamond Host Sponsor, St. Louis Children’s Hospital at Washington University, for the immense time and effort put into making this the best learning and fun experience for all those dedicated to cardiac neurodevelopment and improved outcomes for patients and families.

Cynthia Ortinau MD, Andrea Smith BSN, Amanda Shillingford MD, Caroline Lee MD

CNOC It Out of the Park: Baseball, Bites and Brews

Cardinals Ballpark Village

September 11, 2024

CNOC/PCICS COLLABORATION

In partnership with the Pediatric Cardiac Intensive Care Society (PCICS), we co-coordinated the Neurodevelopment Pre-Conference. It was a great opportunity for collaboration and to increase attention toward neurodevelopment in the pediatric cardiac ICUs. The sessions focused on the risk factors in the cardiac ICU as well as ways to incorporate patient and family centered care. It was a blast!

CNOC TALK - CNOC'S PODCAST

Tune in to episode three of CNOC TALK – CNOC’s Podcast featuring a discussion with Drs. Erica Sood, Brad Marino, Jane Newburger, and Amy Lisanti, of the 2024 American Heart Association Scientific Statement on Neurodevelopmental Outcomes for Individuals with Congenital Heart Disease. Listen here to all past episodes and be sure to subscribe to receive future episode announcements.

EXCITING NEW COMMITTEE ANNOUNCEMENT

Please join us in welcoming CNOC's newest committee. The Advocacy Committee, co-chaired by Ginnie Abarbanell MD and Carissa Ostrom BS, will play an important role in helping to better serve and advocate for our patients and families living with CHD.

NEW SPECIAL INTEREST GROUP - CALLING ALL EDUCATION LIAISONS!

We are excited that our education liaisons are joining forces to help serve our preschool and school-age populations in helping to better assist their educational needs. If interested in joining the Cardiac Education Liaison SIG, please contact Michelle Hughes MEd, Founder and Co-Chair, Roberta Rossman MEd MSW LSW, Founder and Co-Chair or Sarah Johnson MS, Founder and Vice Chair.

SHARE YOUR SCIENCE

Exciting papers and national guidelines recently released.

Abell BR, Eagleson K, Auld B, Bora S, Justo R, Parsonage W, Sharma P, Kularatna S, McPhail SM Implementing neurodevelopmental follow-up care for children with congenital heart disease: A scoping review with evidence mapping. Dev Med Child Neurol.2024;66:161–175. https://doi.org/10.1111/dmcn.15698

Glenn T, Smith C, Miller VA, et al. From worries to resilience: a qualitative study of the psychosocial experiences of diverse adolescents and young adults with heart failure and their caregivers. Cardiology in the Young. Published online 2024:1-8. https://doi.org/10.1017/S1047951124026660

Abell B, Rodwell D, Eagleson KJ, Parsonage W, Auld B, Bora S, Kasparian NA, Justo R and McPhail SM. “It's more than just a conversation about the heart”: exploring barriers, enablers, and opportunities for improving the delivery and uptake of cardiac neurodevelopmental follow-up care. Front. Pediatr. 2024 May 12:1364190. https://doi.org/10.3389/fped.2024.1364190

Leezer S, Mehta R, Agarwal A, et al. Patient-Reported Outcomes Among Adults With Congenital Heart Disease in the Congenital Heart Initiative Registry. JAMA Netw Open. 2024;7(10):e2439629. doi:10.1001/jamanetworkopen.2024.39629 https://doi.org/10.1001/jamanetworkopen.2024.39629

Derridj, N., Calderon, J., Bonnet, D. et al. Neurodevelopmental outcomes of preterm and growth-restricted neonate with congenital heart defect: a systematic review and meta-analysis. Eur J Pediatr 183, 1967–1987 (2024). https://doi.org/10.1007/s00431-023-05419-w

Jones MB, Cameron VK, Lee S, McNelis AM. Traumatic stress in parents of children with congenital heart disease: a scoping review. Cardiol Young. 2024 Sep 16:1-14. https://doi.org/10.1017/S1047951124025332

Pardo, A.C., Carrasco, M., Wintermark, P. et al. Neuromonitoring practices for neonates with congenital heart disease: a scoping review. Pediatr Res (2024). https://doi.org/10.1038/s41390-024-03484-x

Want to share your science? Members submit here!

CNOC Milestones is written and edited by CNOC's Communications Committee. Contact Co-Chairs Chetna Pande and Karli Negrin. #CNOC2025 | @CardiacNeuro | Cnoc_Thrive | www.cardiacneuro.org