Learn what we are, who we are, and what we do.

Our Story

The U.S. health system, historically, has not been well equipped to serve children and youth with special health care needs (CYSHCN). Fundamental gaps in health services leave many CYSHCN and families with unmet healthcare needs, unnecessary caregiving burdens, and suboptimal health, well-being, and quality of life. CYSHCN and their families deserve better.  

Network research holds great promise for improving health systems for CYSHCN in a way that enables learning across multiple sites and systems, and creation and application of new knowledge that is nationally generalizable. In 2017, the U.S. Maternal and Child Health Bureau, Health Resources and Services Administration entered into a Cooperative Agreement to establish a national Health Systems Research Network for CYSHCN to promote and conduct this research. On September 1, 2017, CYSHCNet was born.

Who we are

We are a network of committed researchers, families, clinicians, and administrative and policy partners who work together strategically to accelerate the generation and application of knowledge needed to best help CYSHCN and their families. We strive to not only conduct nationally-relevant health systems research, but also to increase research capacity by training emerging CYSHCN investigators.

Our structure includes a National Coordinating Center based at the University of Colorado School of Medicine (CUSOM), a Secondary Data Center based at Boston Children’s Hospital (BCH), three Collaborating Research Entities with particular strengths in health systems research for CYSHCN, and numerous other academic center partners. We are proud to have strong family partnerships in our work, with Family Voices as one collaborating research entity. Through the Cooperative Agreement structure, we partner closely with MCHB colleagues and staff to conduct and promote Network activities. As the network becomes better established, we plan to partner with additional interested individuals and groups to further build research capacity and ensure its relevance to practice, health policy, and financing.

View our organizational chart for more details about our structure and how we interact as a larger Network focused on health systems research for CYSHCN.

What we do

  • Integrate and align CYSHCN experts and families in a national research network: CYSHCNet is structured to integrate the views of researchers, care professionals, parents and families into a productive, national research network to develop, conduct and disseminate meaningful research to assess and improve health systems for CYSHCN.
  • Advance knowledge of optimal health systems for CYSHCN: CYSHCNet undertakes concurrent multi-site and large-scale secondary data analysis studies aligned with our National Research Agenda in order to learn about and improve health care systems for CYSHCN.
  • Train emerging CYSHCN investigators: CYSHCNet conducts educational programming, mentoring, and funding of pilot research projects for emerging CYSHCN investigators and established investigators who are new to the field of CYSHCN health systems research.

To learn more about what we do, please see our Logic Model and our Project Abstract.