About the CHILD Registry

Children make up 23% of medical patients in the country, and many adult diseases have their roots in childhood. Yet, no single entity is currently collecting child health and development data on all children in the country.

The Child Health Improvement through Longitudinal Data (CHILD) Registry is a clinical data registry under development with the potential to substantially accelerate advances in infant, children, and adolescent health and improve outcomes by providing reliable clinical data to track the trajectory of their well-being and development from birth into adulthood.

CHILD Registry

The purpose of the CHILD Registry is to enable pediatricians and others who care for children to improve child health and well-being, through the use of data. The CHILD Registry supports three primary AAP goals:

• Facilitate data-driven improvements in child health care, outcomes, and well-being;
• Assist pediatricians in their ability to deliver improved care; and
• Positively influence the trajectory of children to healthy adults.

Access to population health data from a registry is the future of medical practice and health care financing. Registries can be used for documenting trends in patient care, benchmarking and improving quality, research, public health surveillance of disease, post-market surveillance of medical interventions, and incentive payment programs. Registries collect clinical and other data on a patient population across institutions and health care systems and provide a complete picture of care for performance measurement and improvement. The development of the CHILD Registry will prepare pediatricians for this changing landscape, enhance their ability to provide the best care to children, and improve child health outcomes.

In short, the CHILD Registry offers considerable value to pediatricians, pediatric medical subspecialists, and pediatric surgical specialists.

1. Improves care, child health, and well-being.
   The CHILD Registry will support pediatricians in delivering better care. It will enable quality improvement and benchmarking, and support pediatrician adoption of clinical care guidelines.
2. Supports physician requirements.
   The CHILD Registry will help pediatricians address a range of requirements, including those related to maintenance of certification, value-based payment, and other regulatory and reporting requirements.
3. Enables research.
   The CHILD Registry will enhance the evidence base for pediatric clinical care guidelines by informing their development and assessing their effectiveness. The Registry will also support health services and other important research related to child health.

Key Aspects of the CHILD Registry

Children and their families, pediatricians, hospitals and health systems, researchers, industry, and payers are all expected to derive benefits from the CHILD Registry. The CHILD Registry will be designed to:

• Use data to improve clinical outcomes for patients. Data will be collected, stored, and used in ways that are compliant with HIPAA and with minimal burden placed on the physician.
• Collect data on a on a continuous basis from a combination of data sources, including electronic health records, practice management and claims systems as well as other systems. The CHILD Registry will link to and be integrated with other registries and data sources.
• The inclusion of patient reported outcomes is being explored to provide complete information on the whole child.
• Inform federal and state government agencies as well as payers, on the best investments in child health, based on quality and outcome measures for pediatric interventions. Data will support negotiations with payers on quality of care and payment.
• Inform the development of clinical practice guidelines and test their implementation; and
• Advance the field of pediatric quality measurement through the collection of a standard set of data elements and benchmarking to improve care for children.