CHILD Registry FAQs

The CHILD (Child Health Improvement through Longitudinal Data) Registry is a clinical data registry, and its mission is to enable pediatricians and others who care for children to improve child health and well-being, through the use of data. Data on children’s health, wellness, acute and chronic diseases, development, and behavior will be collected to improve children’s health outcomes, improve the quality of care provided, reduce variation in care across multiple dimensions, and promote children’s health and well- being into adulthood. To that effect, the AAP's goal is to have all pediatrics stakeholders contribute to and participate in the CHILD Registry to support its mission.

• AAP wants to help pediatric stakeholders improve child health and well-being through the use of data.
• 94% of office-based pediatricians are using an EHR making an unprecedented amount of electronic child health data available.
• Value-Based payment is coming to Medicaid and therefore pediatrics; the AAP wants to be prepared to assist its members.
• The CHILD Registry also delivers on two important AAP objectives:
  • Use data and metrics to develop and prioritize areas of need for child health policies.
  • Provide state-of-the-art pediatric practice information in the context of a changing industry and professional landscape.

The vision of the CHILD Registry is to provide pediatric stakeholders with the following value drivers:

• Benchmarking and improving quality
• Following and documenting trends in children's health
• Value-based payment programs
• Secondary research and analysis

• Using business intelligence and analytics, the CHILD Registry will provide insights into child health and development, common conditions, and rare diseases.
• It will help reduce the burden associated with maintenance of certification, quality improvement, and payment requirements by providing needed data.
• Data will be collected on a continuous basis from a combination of data sources, such as electronic health records and practice management systems, claims, public health data, patient-generated data, and will leverage other registries and data sources.
• When possible, data will be extracted electronically from EHRs.
• Where possible, the CHILD Registry will link to and leverage other registries and data sources.

The CHILD Registry will have an oversight structure that will be convened to guide AAP staff and Registry stakeholders in actualizing the CHILD Registry's mission and drive its sustainability. For example, the Provisional Registry Data Committee (PRDC) was convened in 2021, and provides ongoing collaboration and guidance on data governance and data strategies for the registry.

• The CHILD Registry is not a health information exchange; it will not facilitate the sharing of information among providers for day to day patient care.
• The CHILD Registry is a repository for clinical data that facilitates data-driven improvements in child health care, outcomes, and well-being.

• Individual physician data will never be shared.
• Only aggregate, de-identified data will be used in modules, reports, and AAP initiatives.

CHILD Registry participants will maintain ownership of their own data. The CHILD Registry will maintain ownership of the aggregate data submitted to the data repository.

The CHILD Registry will have a foundation of core measures and reports. Condition-specific and subspeciality modules will be available to serve pediatricians with customized analytics and reporting to support real-world evidence-based medical practices and initiatives.

The primary and initial focus will be clinical data from participant’s EHR; however, claims data, practice management data, and patient-reported data may be added to fulfill quality measure specifications and other future AAP initiatives. The foundational data dictionary will be consistent with the United States Core Data for Interoperability (USCDI) set of data classes.

AAP is developing a data dictionary that will help with the integration process and this resource will be iterative in nature as we work through the pilot program and begin onboarding additional participants.

The AAP has a goal to make data integration the least burdensome for CHILD Registry participants and is closely monitoring rapid advancements and API capabilities amongst EHR vendors and other data sources.

The CHILD Registry will undergo a pilot and testing period tentatively scheduled for 2024-2025. The timeline for the CHILD Registry launch will be dependent on the pilot program due to its iterative nature.

Information about joining the CHILD Registry will be provided upon completion of the pilot program.

Yes, we will honor any patient requests to remove data; however, it is the responsibility of the CHILD Registry participant to obtain the proper permissions and abide by HIPAA regulations. Typically, there is no need to obtain consent to participate in the CHILD Registry because the registry is used for quality improvement purposes. We suggest reviewing your local and state policy regarding registry participation.

The confidentiality, privacy, and security of the CHILD Registry’s data are the utmost priority for the AAP. Any technology vendors partnering with the registry are expected to be held to this priority including being HITRUST certified and demonstrate robust information security compliance programs.

The Provisional Registry Data Committee (PRDC) was convened to provide expertise in informatics, data privacy /security, data integration, and HIT to collaborate with the CHILD Registry Board to guide the data strategy of the CHILD Registry.

Yes, it will be applied throughout the CHILD Registry's dataset.

Participation in the CHILD Registry will be based on a subscription fee. The AAP wants to ensure fair and equitable participation, regardless of practice or organization size. Details of the subscription fee are forthcoming.

Please complete this CHILD Registry Participation Interest form, and we will get back to you.