It’s hard to believe that we are only weeks away from CNOC’s Annual Scientific Sessions, embedded in the 8th World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS). The WCPCCS + CNOC meeting, originally planned for 2020, was postponed in the context of the COVID-19 pandemic. We would like to take this opportunity to reflect on the resiliency and perseverance demonstrated over the past 3.5 years by individuals with pediatric and congenital heart disease (CHD), their families, and the broader community of cardiac neurodevelopmental care professionals. We are thrilled to reunite in person with the international pediatric cardiology community this month to exchange ideas and knowledge that will advance cardiac neurodevelopmental research and clinical care. 

It remains an exciting time to be part of CNOC! The first CNOC-initiated manuscript, reporting on predictors of attending cardiac neurodevelopmental clinic at toddler age, was accepted to Pediatrics last month under the leadership of Dr. Cindy Ortinau, with 26 different CNOC sites represented in the co-authorship. The Research Committee is developing a process to expand the pipeline for investigator-driven CNOC research projects, and the Quality Improvement Committee is working on rolling out a toolkit for CNOC sites to increase referrals to cardiac neurodevelopmental clinics for school-age children with CHD. There are many more examples of dynamic collaborations and grassroots exchanges of research ideas and clinical practice approaches happening within CNOC, and if you are not yet involved, it’s never too late! Our various Special Interest Groups are open to new member applications on a year-round basis.

Please read on for exciting announcements and updates from our CNOC community. We look forward to seeing you soon in Washington DC! 

WCPCCS | Washington DC | August 27-September 1

The 8th World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) is soon approaching! This is a truly diverse and international one-of-its-kind conference. Enhance your experience with these CNOC-specific activities.
For the first time in the history of WCPCCS, there is a full track dedicated to neurodevelopment in infants, children, adolescents, and young adults with heart disease.
Register for CNOC's Neurodevelopment Preconference as you are registering for WCPCCS (registration button below). Here’s the schedule for the day 

Tuesday, August 29 | 5:30p
Cheryl Brosig Soto PhD
Medical College of Wisconsin/Children's Wisconsin

CNOC HAPPY HOUR | Wednesday, August 30 | 4:30-6:30p
Marriott Marquis Ballroom Salon 4 (Meeting Level 2)
All World Congress attendees are invited for light refreshments and networking with CNOC leadership and other attendees. Share your program successes, research discoveries and clinical stories.

CNOC-SPECIFIC CONTENT presented during World Congress
So much to discover! Click here for a condensed day-by-day guide to neurodevelopmental content.
Choose your HOTEL during the registration process
Use the button above for Congress Registration. During this process you will select your hotel. Be prepared by reviewing the remaining lodging options here.
Follow on Twitter for updates: @8thWCPCCS2023 @cardiacneuro

Big Thank You
A tremendous thank you on behalf of the Database and Implementation Committee for your continued commitment to the CNOC registry. Together, across 35 sites submitting data, we have collected 8,203 assessments (5,431 patients) in the 0-5 age range and 1,684 assessments (1,330 patients) in the 6+ age range! The DI team remains committed to streamlining the data entry process by learning from user feedback. Comments or questions about the database or data entry? Contact Chair Joanne Bonanno MA for information about joining CNOC's User Feedback calls on the third Wednesday of each month at 3:00pm ET. 

Upcoming Webinar
The Learning and Resource Committee is excited about hosting an upcoming webinar “Finding the Light on the Journey: Supporting Mental Health in the Pediatric Heart Failure Population.” Please SAVE THE DATE for September 27 from 4:00-5:00p ET/3:00-4:00p CT.

New Leadership Transition
As we prepare for WCPCCS, we are immensely grateful for the work and dedication of Nadine Kasparian PhD MAPS as past Co-Chair of the Program and Meetings Committee! Please join us in welcoming Andrea Smith RN BSN as the new Co-Chair of the Program and Meetings Committee. Andrea is the Program Coordinator for the University of Utah/Primary Children’s Hospital Heart Center Neurodevelopmental Program (HCNP). She was involved in planning the 2021 Utah and 2022 Montreal CNOC conferences and is an active member of the Program Coordinator Network SIG. Andrea and Amanda Shillingford MD are in the throes of planning CNOC's 12th Annual Scientific Sessions, September 2024, in conjunction with Institutional Host St. Louis Children's.
Nadine Kasparian PhD MAPS
Andrea Smith RN BSN
Amanda Shillingford MD
Meet the team at Nemours Children's Health, Wilmington DE
CNOC Founding Institutional Member
The Nemours Cardiac Learning and Early Development (LEAD) Program was founded in 2012 and was one of a few cardiac neurodevelopmental follow-up programs highlighted during the first Cardiac Neurodevelopmental Symposium in Boston. In 2013, the Nemours Cardiac Developmental Care Team was formed to promote inpatient developmental care and neuroprotection in the cardiac intensive care and step-down units. Our team consists of psychologists, speech/feeding therapists, physical and occupational therapists, cardiologists, intensivists, nurses, social workers, dietitians, and other multidisciplinary specialists.

Current research and quality improvement projects focus on improving parent mental health and family wellbeing through prenatal psychosocial intervention, ensuring parental participation in the first feeding experience, and promoting early mobility and holding in the CICU. We also conduct a comprehensive full-day training on developmental care for all new inpatient cardiac nurses as part of their orientation.

Members of our team have been highly involved in CNOC since its inception: Erica Sood PhD previously served as CNOC Co-Chair and currently serves as Co-Vice Chair of the Database and Implementation Committee. Karli Negrin MS CCC-SLP serves as Co-Chair of the Communications Committee and actively participates in the CNNN SIG, Sarah Russell PT and Bridy Hamilton OTR/L are active members of the CNNN SIG, Melissa Duva MSN CCRN previously served as CNOC Treasurer, and Joslyn Kenowitz PhD previously served on CNOC's Telehealth Task Force. The Nemours Developmental Care Team was thrilled that Nemours Children’s Health was the sponsor of the 2022 Preconference Workshop on Parent Mental Health. Multiple members of the Nemours Developmental Care Team will be presenting on neurodevelopmental care during World Congress in Washington DC. 
Recently released national guidelines and exciting papers

Safety of ADHD Medication in Children with CHD “A Preliminary Study of One Year Safety and Tolerability of Attention-Deficit/Hyperactivity Disorder Medications in Youth with Fontan Palliation or Heart Transplant” Jassal et al. Pediatric Cardiology. Feb 2023

PTSD in Parents of Infants with CHD “Prevalence and Associated Factors of Post-Traumatic Stress Disorder in Parents Whose Infancts have Single Ventricle Heart Disease” Bainton et al. Cardiol Young. Jan 2023

Need for Lifespan Intervention Approaches “Trajectories of neurodevelopment and opportunities for intervention across the lifespan in congenital heart disease” Sanz et al. Child Neuropsychology. February 2023

Focus on Adult CHD “Mental health in adult congenital heart disease” Moons et al. International Journal of Cardiology Congenital Heart Disease. June 2023

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