On behalf of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) Steering Committee, we offer our sincere appreciation of your support of CNOC and its mission. Thanks to your partnership, we have made tremendous progress towards our goals.
- Launched our multinational, multisite clinical data registry in May 2019 to house neurodevelopmental and psychosocial data from patients with pediatric and congenital heart disease. The CNOC data registry was built as a module of PC4/PAC3 to facilitate collaboration and data sharing, limit data acquisition requirements for each site, reduce costs, reduce regulatory burdens, and allow us to collect and house data more quickly.
- Established a contract and developed a collaboration with ArborMetrix, a healthcare analytic company, to build and continue to refine our data registry.
- Joined Cardiac Networks United as one of the founding networks and selected the University of Michigan to serve as our Data Coordinating Center (DCC), which allows for more efficient sharing of resources.
- Awarded funding for our first Neurodevelopmental (ND) Core Lab to Children’s National Health System in Washington, DC, with Jacqueline Sanz PhD ABPP-CN as Principal Investigator. The ND Core Lab, in concert with the DCC, oversees the quality of our neurodevelopmental and psychosocial registry data.
- Awarded funding for our first Data Analysis Core to Boston Children’s Hospital, with David Wypij PhD as Principal Investigator. The Data Analysis Core will conduct data and statistical analyses to produce and disseminate knowledge regarding neurodevelopmental and psychosocial outcomes.
- Formed eight CNOC standing committees dedicated to database, research, quality improvement, publications, communications, education/training, community outreach, and program and meeting efforts. Each committee is comprised of multidisciplinary professionals across CNOC member institutions and patient/parent stakeholders.
- Received an R13 conference grant from NHLBI, in partnership with Lurie Children’s Hospital, to bring international experts in cardiac neurodevelopmental research and clinical care, quality improvement science, and health equity together with patient and parent stakeholders to define the cardiac neurodevelopmental research agenda for the next decade. This work has been completed; a series of papers outlining critical questions that need to be answered to move the field of cardiac neurodevelopment forward will be submitted to Cardiology in the Young in Spring 2020.
- Prepared a series of papers on cardiac neurodevelopment which include CNOC’s recommended neurodevelopmental test batteries for infants, toddlers, preschoolers, and school-age children/adolescents with CHD.
- Initiated a multisite quality improvement project led by the CNOC QI committee to test interventions aimed at increasing outpatient cardiology recognition of high-risk status and referral to cardiac neurodevelopment programs for school-age patients.
- Organized and held our largest CNOC Annual Scientific Sessions in Toronto! Highest number of abstract submissions (77% increase from last year) and highest number of registrants to date (305, 20% increase from last year), representing 75 institutions and organizations from 12 countries, and 15+ disciplines.
Continued collaboration with our Institutional Members will allow CNOC to determine and implement best practices of neurodevelopmental and psychosocial services for individuals with pediatric and congenital heart disease and their families through clinical, quality improvement, and research initiatives. Thank you again for your partnership and support.