Office of Epidemiology and Research, Division of Research

Advancing Applied MCH Research

Health Systems Research Network for CYSHCN

Project Number: UA6MC31101
Grantee: Regents of the University of Colorado, The
Project Date: 09/01/2017
Principal Investigator: Christopher Stille

Final Report



  • Perinatal/Infancy (0-12 months)
  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)
  • Young Adulthood (19-25 years)

Targeted/Underserved Population

  • Special Health Care Needs


Problem. Children and youth with special health care needs (CYSHCN) deserve a better health care system. The MCHB Core Elements and AMCHP Standards of Care were designed to stimulate health system improvement for CYSHCN. Rigorous multi-site research on system interventions related to the Elements and Standards is urgently needed. Goals. We propose to (1) create a national, family-engaged CYSHCN research network through integration and alignment of CYSHCN experts; development and sharing of valuable Network assets; and vesting authority in CYSHCN & families at all levels; (2) advance knowledge of optimal health systems for CYSHCN, by establishing a national research agenda to catalyze investigation; conducting multi-site health systems research on CYSHCN; disseminating findings to inspire health system improvements; and sustaining and scaling research activities with external funding; and (3) train emerging CYSHCN investigators, by enhancing research training of emerging investigators; building strong intra and cross-institutional mentoring; and sparking emerging investigator projects with Network funds. Proposed Activities and Target Population. We will create a robust, inclusive, research infrastructure, with a National Coordinating Center (NCC) and three Collaborative Research Entities (CREs), and a Secondary Data Center, at its core, with governance modeled after existing, national research networks. We will engage families as partners at all levels. With diverse stakeholders, we will establish a research agenda that prioritizes the most critical research topics in systems of care for CYSHCN and carry out such research on a national scale. In the first 5 years, we will conduct at least 3 multisite prospective studies on health systems, with the goal of obtaining external funding for each, and 10 retrospective studies on populationbased databases. Targeted populations will include YSHCN, those with medical complexity, and vulnerable racial/ethnic and socioeconomic groups. Finally, we will establish a national training program with the triad of integrated curriculum, mentorship, and small grant funding. Coordination. An Executive Committee (EC) and Steering Committee (SC) of Network leadership and representatives from the NCC and CREs will set policy and oversee Network activities, in cooperation with MCHB. CREs will provide the primary settings for initial projects. Products. (1) Well-coordinated infrastructure to support family-engaged multi-site studies; (2) A published national research agenda; (3) At least 13 manuscripts reporting findings; 4) A website, webinars, and local and national presentations to disseminate findings; 5) For emerging researchers, curriculum delivery, a mentorship network, and yearly small grant program. Evaluation. Adapt existing assessments of network effectiveness, review progress semiannually and compare to objectives set by the SC; and evaluate each objective against specified goals. Quality improvement methods will be used to identify strategies to overcome missed targets.




CYSHCN, Integration of Care

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