|A significant enhancement to member benefits, CNOC is collaborating with ArborMetrix and the Pediatric Cardiac Critical Care Consortium (PC4) to set up a robust and easily accessible central database to house neurodevelopmental outcome data, in addition to preexisting medical data.
The Member Institutions selected as CNOC’s Data Coordinating Center (DCC), Neurodevelopmental Core Lab (NDC) and Data Analysis Core (DAC) are working on a focused set of goals, including characterizing the development of infants, toddlers, and preschoolers who have undergone neonatal cardiac surgery using a limited list of demographic, neurodevelopmental, medical history, and surgical variables. As initial aims are achieved, additional research questions will be generated and additional sources of support will be sought. Additional ages of follow-up, neurodevelopmental testing outcomes, quality of life outcomes and medical history data are expected to be added to these efforts.
University of Michigan/Cardiac Networks United serves as CNOC’s Data Coordinating Center (DCC) and manages the database, ensuring the quality of the data. Funding for the DCC is $75,000/year for five years, beginning June 1, 2018. For questions about the DCC, contact Caren Goldberg MD MS.
Children’s National Health System, as the Neurodevelopmental Core Lab (NDC), is responsible for supporting these goals by ensuring the fidelity and quality of neurodevelopmental data collection, facilitating access to key measures and appropriate training in the administration and scoring of measures, and supporting the integrity of scientific applications of these data in research. Funding for the ND Core Lab is $40,000/year for five years, beginning June 1, 2018. If you have questions regarding the Neurodevelopmental Core Lab please contact Jacqueline Sanz PhD ABPP-CN.
As CNOC’s Data Analysis Core (DAC), Boston Children’s Hospital coordinates with the DCC and the NDC to create clean datasets and specifically conduct data and statistical analyses. Funding for the Data Analysis Core is $30,000/year for a period of five years, beginning June 1, 2018. If you have questions regarding the Data Analysis Core please contact David Wypij PhD.