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On behalf of CNOC we would like to wish everyone a happy new year! We have started 2024 with a busy slate as we expand our reach on multiple initiatives within our collaborative. We have achieved several important milestones in these last few months! First, our Communications Committee recorded and released the first episode of our new podcast series, CNOC Talk! Hosts Karli Negrin and Caroline Lee led a lively discussion with us and Sarah Kelly on the origins of CNOC and our vision for the future. If you haven’t had the chance, take a listen here and be sure to subscribe for future episodes. Second, Erica Sood and Brad Marino led an expert multi-disciplinary group in an updated Scientific Statement from the American Heart Association published this month, titled: “Neurodevelopmental outcomes for individuals with CHD: Updates in neuroprotection, risk-stratification, evaluation, and management.” This is an update to the 2012 AHA Scientific Statement and will undoubtedly be a key resource in the field of cardiac neurodevelopment.
In the month of March, we look forward to a collaboration with the Fetal Heart Society in a special webinar titled, “The Fetal Brain in Congenital Heart Disease”. Finally, our Programs and Meetings committee has been busy in planning our 2024 Scientific Sessions which will be held from September 11-14 in St. Louis. This promises to be a fantastic and inspiring meeting bringing together our community from all over the world. Below you will find more details on the meeting. We are excited to continue partnering with our international colleagues and welcome their membership into our collaborative. As a reminder, we have established specific membership tiers for our international colleagues, which can be found here.
Our community has come together to establish this incredible collaborative and build our 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.
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CNOC TALK! - CNOC'S FIRST PODCAST
"What is CNOC and why is it important?"
Join your hosts, Caroline Lee and Karli Negrin, as they chat with Sarah Kelly, Shab Peyvandi and Kelly Wolfe about the origins of CNOC, their 'aha" moments regarding neurodevelopment in congenital heart disease, and their vision for the future of the field. Listen here, and be sure to subscribe for future episodes.
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CALL FOR ABSTRACTS
Mark your calendar for CNOC's 12th Annual Scientific Sessions, September 12-14, hosted by St. Louis Children's Hospital at Washington University and brought to the learner in hybrid format.
The online Call for Abstracts is open through May 1. Categories for submission include Research, Quality improvement, Education, and Case Reports/Case Series. Top rated abstracts will be selected for presentation, including categories for Trainee and Early Career Researchers. Submit your abstracts here.
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NEW STATEMENT FROM THE AMERICAN HEART ASSOCIATION
As an update to the 2012 AHA Scientific statement regarding neurodevelopmental outcomes in children with congenital heart disease, a new statement was recently released titled, “Neurodevelopmental outcomes for individuals with CHD: Updates in neuroprotection, risk-stratification, evaluation, and management.” Find this key resource here.
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COLLABORATION WITH ADULT CONGENITAL HEART ASSOCIATION
With the support of the 2023 Meil Family Foundation Award for Neurocognitive Studies from the Adult Congenital Heart Association (ACHA), Adam R. Cassidy PhD LP ABPP and Michelle Gurvitz MD (PIs) are convening a conference to map out priorities for the next decade of neuropsychological and psychosocial research in ACHD. This April conference in Atlanta, entitled "Identifying Research and Clinical Priorities to Optimize Neuropsychological and Psychosocial Outcomes for Adults with Congenital Heart Disease," or "ACHD/Neuro 2024" for short, includes more than 20 providers, many of whom are leaders in CNOC, with expertise spanning a range of disciplines, including psychology, neuropsychology, psychiatry, cardiology, cardiac surgery, nursing, neurology, neuroradiology, and neuroscience.
Importantly, these providers are joined by six adults with CHD whose lived experience will help to guide the process. Conference participants have been subdivided into three working groups, each covering a key domain: Genetics and Brain Health (Sarah Morton MD and Thalia Field MD, co-leads), Characterizing Neuropsychological and Psychosocial Outcomes in ACHD (Kelly Wolfe PhD ABPP and Jamie Jackson PhD, co-leads), and Neuropsychological and Psychosocial Interventions for Adults with CHD (Dawn Ilardi PhD ABPP and Ali Zaidi MD, co-leads).
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INSTITUTION SPOTLIGHT
St. Louis Children's Hospital
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The St. Louis Children’s Hospital Cardiac Neurodevelopmental Program was founded in 2014 and is led by Caroline Lee MD. The inpatient Developmental Care Program is a multi-disciplinary group of providers who provide individualized developmental care for patients 6 years and younger in the Heart Center. Their goal is to support the developmental care needs of the child and family, identify practical ways of implementing appropriate developmental care, and educate bedside nurses and the medical team about how they can support developmental and family-centered care. The inpatient program also has a dedicated Heart Center-Inpatient Neurology Consultation Service that provides a mechanism for identification, comprehensive neurological evaluation, and provision of longitudinal care for Heart Center patients. The team works collaboratively with the cardiac intensive care unit and cardiac transitional care unit to facilitate the use of neuroimaging and other neurology-specific investigational studies, participate in meetings with families, and establish continuity of care for longitudinal follow-up. The inpatient team also includes The Perinatal Behavioral Health Service team that provides dedicated mental health support staff and resources to the Heart Center. This team cares for families beginning in the prenatal period, through hospital admissions, and in the outpatient center.
Their outpatient program is the Cardiac Neurodevelopmental Clinic (CNDC) at St. Louis Children’s and Washington University Heart Center and is a multidisciplinary team made up of pediatric cardiologists, pediatric cardiac advanced practice nurses, pediatric neurologists, pediatric psychologists, a physical therapist, occupational therapist, speech therapist, and dietician. They provide neurologic, neuropsychiatric, and developmental screening, evaluation, and coordinated care to children with congenital heart disease from infancy through school age. The team also includes an educational liaison who helps parents advocate for their child and navigate services in the school system.
Their research program, the Cardiac Neurosciences Group, studies brain development and neurodevelopmental outcomes for children with congenital heart disease. Their work has focused on understanding the nature, timing, and trajectory of altered brain development in infants and children with congenital heart disease, as well as application of fetal brain magnetic resonance imaging to understand the physiologic, genetic, environmental, and parenting factors affecting prenatal brain development and subsequent neurodevelopmental outcomes after these children are born.
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SHARE YOUR SCIENCE
Exciting papers and national guidelines recently released.
“Perioperative Brain Injury in Relation to Early Neurodevelopment Among Children with Severe Congenital Heart Disease: Results from a European Collaboration.” Neukomm A et al. J Pediatr. 2024 Mar. https://pubmed.ncbi.nlm.nih.gov/37995930/
“An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease.” Harris, K, et al. PEC Innov. 2024 Feb. https://pubmed.ncbi.nlm.nih.gov/38404930/
“Neuroimaging and Neurodevelopmental Outcomes Among Individuals With Complex Congenital Heart Disease: JACC State-of-the-Art Review.” Phillips K, et al. J Am Coll Cardiol. 2023, Dec. https://pubmed.ncbi.nlm.nih.gov/38030353/
Want to share your science? Members submit here!
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