Main Content


CLINICAL REGISTRY
• A multinational, multicenter, collaborative
data resource.
• CNOC and PC4 member sites trained
for data entry.
• Visit Member Login for the Manual of
Operations and Data Dictionary.

• Multicenter collaborations to better understand the
neurodevelopmental, behavioral, and mental health
outcomes of individuals with congenital heart disease
• International registry of neurodevelopmental outcome data
• Development of innovative interventions to
neurodevelopmental outcomes

• Optimizing neurodevelopmental outcomes
and quality of life for individuals with pediatric and
congenital heart disease across the lifespan
• Implementation of best practices for
cardiac neurodevelopmental programs
• Translation of research findings into standardized
assessment and clinical care practices

IMPROVEMENT
• Maximizing neurodevelopmental outcomes by measuring
and disseminating benchmarking data comparing
international best practices for neurodevelopmental
care of individuals with congenital heart disease
• Translation and streamlining research findings
into standardized clinical best practices
• Dissemination of research-supported interventions
into clinical care
CNOC CLINICAL REGISTRY
- The Clinical Registry is a multinational, multicenter, collaborative data resource.
- CNOC and PC4 member sites can begin data entry as soon as their site’s ArborMetrix contract is in place and team members have viewed CNOC’s training webinar and passed the learning quiz. The platform for non-PC4 CNOC members will launch later in 2019.
- The Clinical Registry Manual of Operations, Instructions for Data Entry, Data Dictionary, and training webinar recording can be referenced in the MEMBER LOGIN section of the CNOC website.
- If you have questions, please speak with the CNOC champions at your site or contact CNOC at [email protected]