NEWS FROM LEADERSHIP

We were thrilled to reunite in person with the international pediatric cardiology community at the 8th Word Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) in Washington DC. CNOC made quite the impression with our Neurodevelopment track and social events to celebrate our advancements, collaborations and future plans to advance cardiac neurodevelopmental research and clinical care. Below you will find a more detailed summary of the meeting as well as our announcement for CNOC’s 12th Annual Scientific Sessions in St. Louis in 2024! 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 options for our colleagues outside of the USA and Canada, which can be found here.
 
We applaud the dedication and effort of the CNOC community in coming together to establish an incredible clinical registry (currently including over 9,000 assessments), providing a unique opportunity to study and track neurodevelopmental outcomes in our patients. Our Committees are developing new initiatives to increase access to the clinical registry for investigators in the CNOC community and we look forward to seeing the rigorous research and quality initiatives that will utilize this data with the goal of optimizing neurodevelopmental outcomes for all individuals with pediatric and congenital heart disease. Additionally, our Committees and Special Interest Groups continue to meet regularly to exchange ideas and best practices for inpatient and outpatient neurodevelopmental care, and advocate for increased access and improved health equity in our field. We are so proud of all the work being done at a grassroots level within CNOC.
 
It remains a fantastic time to be part of CNOC! We would like to extend a special welcome to our newest Institutional Member, Columbia University, with site lead Amara Majeed MD. Please read on for more exciting announcements and updates from our CNOC community. 

Sincerely,
ANNOUNCEMENTS: WORLD CONGRESS
WCPCCS | Washington DC | August 27-September 1

It was a gorgeous week in DC for the 8th World Congress of Pediatric Cardiology and Cardiac Surgery, packed with amazing neurodevelopmental sessions, 120+ poster presentations, and fabulous networking. The CNOC-specific tracks were so popular and well attended that we had to find additional seating and had a few warnings from the fire marshal! Dr. Cheryl Brosig Soto delivered a beautiful Newburger-Bellinger Award keynote on “Caring for Our Patients, Ourselves, and Each Other: Reflections from a Parent-Provider” reminding all of us that there is strength in vulnerability and the importance of taking care of ourselves and each other as we continue this important work.

CNOC's Happy Hour was a fun celebration of this community! We connected with 35 new people who were interested in becoming CNOC members and spent the evening reconnecting with friends and colleagues from across the globe who are all dedicated to cardiac neurodevelopment and improved outcomes for patients and families.
CNOC COMMITTEE & SIG UPDATES

Upcoming Research News
As CNOC's Clinical Registry database continues to accrue neurodevelopmental outcomes data, the Research Committee is excited to promote utilization of this data by CNOC members and throughout Cardiac Networks United. The original Aim 1 project examining factors related to return for neurodevelopmental follow-up has been accepted for publication in Pediatrics. The Research Committee is working with the DAC and NDC to finalize analysis for the multi-pronged Aim 2 and were pleased to have three abstracts presented at World Congress showcasing data from this project.
 
Work has been started to standardize the ancillary project application process in hopes of making data from CNOC's database increasingly accessible to all CNOC members. A webinar to describe this process is planned in the next two to three months. Engagement with other Cardiac Networks United registries to facilitate utilization of CNOC data for research and quality improvement efforts across collaborations is the goal.

Updates from CNOC Special Interest Groups
CNOC's Diversity and Inclusion SIG is seeking bilingual neurodevelopmental assessment care providers to serve on a work group as "Bilingual Champions" in our efforts to develop guidelines and standards for bilingual assessment practices across CNOC sites. If interested, please contact Liz Willen at ejwillen@cmh.edu and Sonia Monteiro at samontei@texaschildrens.org.

The Cardiac Neurodevelopment Program Coordinators (CNPC) SIG is working to create a site contact registry to guide CNOC members interested in touring other sites. Anyone interested in sharing their site’s contact information or guidelines on site touring is welcome to reach out to Rebecca Chen BSN (Rebecca.Chen@childrensnational.org) or Vanna Kazazian MN NP (vanna.kazazian@sickkids.ca) to be added to this database. Please include any information necessary from the site in regard to touring (i.e., contact person, required forms/applications for tours, fees for touring, etc.). 

There has been tremendous interest in the newest SIG - Innovative Approaches to Outpatient Neurodevelopmental Care. To date, the group has a participant list of 35 individuals representing 24 sites across our CNOC membership with follow-up programs in different stages of development. This SIG includes professionals across multiple disciplines including psychologists, neuropsychologists, physicians (cardiologists, neonatologists, developmental pediatricians), nurses, speech language therapists, occupational therapists, and physical therapists. During their initial meeting in early June, primary topics of interest identified by the group related to the development of tools, strategies, and processes to improve clinical practice and to use this group as a networking platform. For more information, please contact Stephany Cox PhD (scox4@rchsd.org) or Renee Sananes PhD (renee.sananes@sickkids.ca).
SHARE YOUR SCIENCE
Recently released national guidelines and exciting papers

Looking to Improve Attendance at Neurodevelopmental Evaluations “Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation” Ortinau et al. Pediatrics. September 2023 https://pubmed.ncbi.nlm.nih.gov/37593818/

Differential Outcomes in CHD “Associations Between Maternal Sociodemographics and Hospital Mortality in Newborns With Prenatally Diagnosed Hypoplastic Left Heart Syndrome” Lopez et al. Circulation. July 2023 https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.123.064476

Expert Consensus Status “Recommendations for Centers Performing Pediatric Heart Surgery in the United States” Backer et al. Annals of Thoracic Surgery. September 2023 https://www.annalsthoracicsurgery.org/article/S0003-4975(23)00915-3/fulltext

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