Our mission is to improve the health, quality of life, and well-being of all children and youth with special health care needs and their families through rigorous research by:
- Informing meaningful policy impact
- Prioritizing lived experience partner expertise
- Accelerating collaborative transformation of systems of care for children and youth with special healthcare needs (CYSHCN)
Our vision is that children and youth with special health care needs and their families thrive, with systems and policies designed to work for them.
- Family Partnership
- Family-Centered Approach
- Collaboration
- Long-Term Impacts
- Scientific Merit
The Systems and Policy Research Network serves CYSHCN in all 50 states through 16 sites. These sites provide a wide range of services, including medical and surgical care, therapy, social work, case management, education, and help for families navigating the system.
The Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) defines CYSHCN as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”
Researchers across the network are skilled in diverse study designs, including epidemiologic, interventional, qualitative, quantitative, and clinical trials. They also use methods such as case-control studies, time series analyses, surveys, interviews, and systematic reviews. Their work helps develop tools and programs that fill care gaps, improve health systems, guide policy decisions, and enhance the well-being of CYSHCN and their families.
Our Partners
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Our Supporters
- Health Resources and Services Administration (HRSA), including its Maternal and Child Health Bureau (MCHB), of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children with Special Health Care Needs Research Network
- Lucile Packard Foundation for Children’s Health
- National Institutes of Health, including the National Institute of Child Health and Human Development and the National Heart, Lung, and Blood Institute
- Agency for Healthcare Research and Quality
- Patient-Centered Outcomes Research Institute
We sincerely appreciate all supporters, though this list may not represent every supporter of network projects at any given time. The information, content, and conclusions presented do not necessarily reflect the official position or policy of, nor imply endorsement by, the funding agencies or the government.