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Overview of the National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs

by: Christopher J. Stille, Ryan J. Coller, Charlene Shelton, Nora Wells, Anna Desmarais, Jay G. Berry

This executive summary introduces the National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs, a supplement to Academic Pediatrics. Authors identify six research priorities aimed at improving health outcomes and well-being for children and youth with special health needs and their families: transition to adulthood, caregiving, family health, child health care, principles of care, and financing.

Learn more about the supplement and access all the articles.

Journal Article

Associated Grant

A Roundtable Process Plan to Create Systems-Level Change for Young Adult Patients

Generation Patient

This small grant supports Generation Patient’s planning process to create a Roundtable on Young Adults with Chronic Medical Conditions.

Lost in Transition: Gaps in Care as Teens with Special Health Care Needs Transition from Pediatric to Adult Care Systems

University of Chicago

This grant will support the first-ever population-level analysis of the experience of transition for CYSHCN covered by Medicaid. The research team will produce national estimates of age-related changes in outcomes such as Medicaid access, primary care availability, and health care and long-term care usage and spending.

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A National Health Systems Research Agenda for Children and Youth With Special Health Care Needs: Supplement to Academic Pediatrics

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