AAP to collect data from EHRs, payers to develop clinical registry of US children

The American Academy of Pediatrics board committed $583,000 in resources to establish the Clinical Health Information and Longitudinal Data Registry, AAP News Editor-in-Chief Anne Hegland wrote Nov. 21.

To develop the CHILD Registry, the AAP will capture children's health data through EHRs, health payers and existing pediatric disease registries. The organization's goal for the project is to collect, store and analyze health data from all U.S. children, including information related to well-child and sick visits, chronic disease management and specialty care.

The clinical data registry, which AAP officials plan to develop over the next five years, contributes to two of the organization's strategic objectives: using data to prioritize areas of need for child health policies and providing state-of-the-art practice information. The AAP also plans to use information from the registry to inform its guidelines and policies.

The AAP will establish a work group to provide clinical direction over the CHILD Registry. The initial plan is for pediatricians to continue to own their datasets, although they may give the AAP permission to distribute and report them. The registry will also include a patient portal to allow parents and patients to submit their own data.

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