NEWS FROM LEADERSHIP

  • Tom Miller DO and Adam Cassidy PhD ABPP-CN transitioned into the roles of CNOC Co-Chairs in November -- welcome Tom and Adam!
  • CNOC now has 45 Institutional Members throughout North America and Europe.
  • CNOC’s 9th Annual Scientific Sessions, in collaboration with Texas Children’s Hospital, took place virtually in November 2020. Nearly 700 registrants joined us, making this our biggest ever meeting! Recorded presentations and slides are now available on-demand through the mobile meeting guide for all conference registrants. Stay tuned for news about our 2021 meeting!
  • CNOC recently launched special interest groups (SIGs)! The first three CNOC SIGs are: Cardiac Neurodevelopmental Newborn NetworkDiversity and Inclusion, and CHD and the Developing Fetal Brain. Find out more here
  • The first official publications of The CNOC Collection are now available from Cardiology in the Young!
  • CNOC's Telehealth Taskforce has worked hard throughout the COVID-19 pandemic to support our Institutional Members with navigating the current telehealth landscape. Click here for useful materials from the Taskforce.
CLINICAL REGISTRY UPDATE

  • The School-Age module (ages 6+) launched Summer 2020!
  • 21 CNOC member institutions are now regularly entering data into the Clinical Registry.
  • More than 1,300 neurodevelopmental assessments have been entered to date.
  • The first analyses using CNOC registry data have been conducted and results were presented during CNOC’s 9th Annual Scientific Sessions in November.
STANDING COMMITTEE SPOTLIGHT

Education and Training Committee
Chair: Laurel Bear MD, Vice Chair: Jennifer Fogel SLP
Immediate Past Chair: Renee Sananes PhD

  • Distributed CNOC Education & Training survey to stakeholders for identification of their most important needs related to education/training for program development and method of information dissemination.
  • Reviewed survey results and developed priorities for program development including need for collaborations with Communications Committee to highlight new developments in practice (e.g., transition to the Bayley 4).
  • Organized a webinar about administration of the Bayley 4 and presented to CNOC registrants on August 14, 2020. This webinar is available for viewing in CNOC’s Member section. Click here for the recording, where you can also find the Cardiac Networks United virtual conference on health disparities in pediatric and congenital cardiology.
  • Hosted another webinar on January 14, 2021, Meeting Education Challenges During a Pandemic: What’s Working, What’s Not? The webinar recording will be posted in CNOC’s Member section.

Research Committee
Chair: Cynthia Ortinau MD MSCI
Co-Vice Chairs: Jennifer Butcher PhD and Caitlin Rollins MD MS
Immediate Past Co-Chairs: Dawn Ilardi PhD and Mike Seed MD

  • Developed two Primary Aims for CNOC’s initial analyses of data from the Clinical Registry.
  • Worked with the Data Coordinating Center, the Data Analytic Core, the Neurodevelopmental Core, and the Database Committee to identify demographic, socioeconomic, and clinical variables of interest for the Primary Aims.
  • Presented the initial registry data during CNOC’s 9th Annual Scientific Sessions. Preliminary analyses showed lower scores on the Bayley Scales of Infant Development for children with single ventricle heart disease, STAT category 5, genetic diagnoses, younger gestational age at birth, longer postoperative length of stay, and later age at the time of cardiac surgery. Children of Hispanic ethnicity also had lower scores, which was related to lower maternal education. Additional analyses are now underway to further define these associations.
  • Forming writing committees for the manuscripts that will result from the Primary Aims.
  • Developing procedures for ancillary studies interested in utilizing CNOC’s Clinical Registry data, including proposal submission and review.
Richard James, Parent 

I became involved with CNOC as part of my learning and advocacy journey as parent to Lucy, my kid with HLHS, who is now almost 21 and a thriving student at Mount Holyoke. Our shared experiences as patient and parent galvanized my interests in patient-engaged research and involvement in the full spectrum of efforts to improve the health of kids like mine - including long-standing work with Mended Little Hearts, state-level advocacy as an appointee to Delaware’s Newborn Screening Advisory Committee, as a parent partner in NPC-QIC’s Family Cardiac Resiliency (CaRES) team, and most lately as a lay grant application reviewer for AHA, member of our hospital’s Ethics and Patients’ Rights Committee, lay member of AEREO: the Consortium to Advance Effective Research Ethics Oversight, and as a member of CNOC’s Publications Committee. 
As a librarian with an interest in health literacy, I was able to contribute to NPC-QICs long-standing efforts in plain language research summaries and, through my professional work, I have a good understanding of and experience with academic publishing and peer review, which has enabled me to contribute meaningfully to the efforts of the publications committee, to be included as a contributor to research articles, and to encourage efforts to provide avenues to disseminate CNOC research to lay audiences - who are both the source of the research and the intended recipient of the research outcomes, and are often overlooked and unrecognized at both ends of the research cycle! I believe that patient involvement at every part of the research process is probably helpful, but is also ethically mandatory - I’ve spoken about this at Cardiac Networks United, and at the 2020 PRIM&R and American Society for Bioethics and Humanities conferences, and continue to work with PCORI and AEREO to investigate new ways to promote public participation in every aspect of the research lifecycle.
CNOC PRESENTED WITH 2020 TITA HUTCHENS AWARD

CNOC was awarded the Mended Little Hearts Tita Hutchens Award for helping support, educate, and advocate for CHD families. Mended Little Hearts is a national organization whose mission is to provide hope and support to children, families and caregivers impacted by CHD in order to extend and improve quality of life. This award was created in 2015, in memory of Tita Hutchens, founder of Mended Little Hearts, to honor those individuals and organizations that have provided outstanding service to Mended Little Hearts to help the program better serve its mission. CNOC hosted a joint session with Mended Little Hearts at #CNOC2020 which was offered free of charge to patients and families.
MEET THE MEMBERS
Nationwide Children's Hospital

The Cardiac Neurodevelopmental program at Nationwide Children’s Hospital in Columbus, Ohio was established in 2014 and is under the leadership of cardiologist Dr. Omar Khalid, who recently published their findings of early neurodevelopmental outcomes in children after the Hybrid procedure. Read more about their program for 0-5 year old patients here.
UCSF Pediatric Heart Center
Healthy Hearts and Minds Program

The neurodevelopmental program at UCSF offers a multidisciplinary approach to research and clinical care from infancy to adolescence. Established in 2017 with program leaders Dr. Shabnam Peyvandi (cardiologist) and Dr. Stephany Cox (neuropsychologist), their multidisciplinary research team is developing new imaging tools to understand brain development and acquired brain injury. Read more here.
CNOC Milestones is written and edited by CNOC's Communications Committee. Contact Sarah.Kelly@childrenscolroado.org 


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