Data Registry to Track Childhood Health, Illness Trends

Nov. 26, 2017
The American Academy of Pediatrics has begun work on a registry to collect, store and analyze health data on all U.S. children.

The American Academy of Pediatrics has begun work on a registry to collect, store and analyze health data on all U.S. children.

The AAP board agreed to commit $583,000 in resources from the Tomorrow’s Children Endowment to begin development of a child health clinical data registry, which is expected to unfold over five years, according to a report on the AAP web site.

The initiative, called the Clinical Health Information and Longitudinal Data (CHILD) Registry, is the outgrowth of two of AAP’s strategic plan 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.

Data would be captured through electronic health records, integrated health care systems, payers and existing pediatric disease registries. Data elements would include well-child and sick visits, chronic disease diagnosis and management, specialty care, and developmental and behavioral care. The registry also would include a patient portal to allow parents and patients to input data, while alleviating complications surrounding privacy laws.

Christoph Lehmann, M.D., medical director of the AAP Child Health Informatics Center, and professor of pediatrics and biomedical informatics at the Vanderbilt University School of Medicine, presented project details to the board and said that the registry would track childhood health and illness trends, which would help draw conclusions on a number of areas, including gaps in care, treatment options and regional variations in care. The data also will help inform the creation of AAP guidelines and policies, and provide guidance to payers.

Members could use the data to help create reports for quality improvement projects, as well as for meaningful use and Maintenance of Certification, Lehmann said.

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