- Identified a data registry partner and plan to house our collective data. We have engaged ArborMetrix to build and house our data registry. ArborMetrix has immense experience housing cardiac data, allowing us to collaborate between the CNOC registry and PC4 and PAC3. This collaboration limits data acquisition requirements for each site, reduces costs, reduces regulatory burdens, and allows us to collect and house data more quickly. With the University of Michigan as our Data Coordinating Center, resources are shared more efficiently.
- Awarded funding for our first Neurodevelopmental Core Lab to Children’s National Health System in Washington, DC, with Jacqueline Sanz PhD ABPP-CN as Principal Investigator. The Core Lab oversees the quality of our neurodevelopmental registry data.
- Released an RFA for the Data Analytic Core. This entity will work closely with ArborMetrix, the DCC, and the ND Core to answer valuable research and quality improvement questions.
- Received an NHLBI R13 grant to fund a two-day meeting of international experts and stakeholders in cardiac neurodevelopmental research to produce a white paper that will guide the next decade of neurodevelopmental research. This grant serves as a springboard for additional funding applications to provide further support for scientific innovation through CNOC.
- Organized and held our largest CNOC neurodevelopmental symposium. Highest attended symposium to date with 202 registrants (~40% increase in attendance compared to 2015 and 2016 conferences) representing 56 international institutions, and 15+ disciplines (Cardiology, Surgery, Anesthesia, Developmental Pediatrics, Rehabilitation, Neurology, Psychology, Neuropsychology, Nursing, Basic Scientists, Education, Social Work, Speech/Language, Physical Therapy, Occupational Therapy, Nutrition).
- Solicited Applications for Patient/Family Leadership and Participation. We have had an overwhelming response from patients and family members who are eager to be involved at multiple levels of the organization.
Our continued collaboration with Member Institutions 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.