About Us

A family-centered approach that uses the valuable insights of family caregivers, young adults, and youth enhances the research process and outcomes for CYSHCN and their families.

A core value of CYSHCNet is to include the knowledge, expertise, and experience of people with lived experience in the research process. Youth and family partners are engaged in all aspects of CYSHCNet projects from planning, through data collection, to reporting and dissemination of research outcomes.

CYSHCNet was founded in 2017 as a cooperative agreement with HRSA’s Maternal and Child Health Bureau to research health systems that support CYSHCN, their families, and providers.

CYSHCNet serves children and youth with special health care needs (CYSHCN) across all 50 U.S. states.

Our 18 CYSHCNet sites offer a breadth of primary, specialty, and surgical care as well as therapy, social work, case management, patient and family education, family navigation, and other health services for CYSHCN.

All sites have a medical home for CYSHCN with variation in size, setting, structure, personnel, care processes, and medical complexity of patients served.

CYSHCN researchers across the 18 sites are proficient in myriad designs including epidemiologic, interventional, cross-sectional, longitudinal, qualitative, quantitative, retrospective, and prospective. CYSHCN site researchers are also experienced with case-control, time series, clinical trials (cluster, controlled, pragmatic, stepped-wedge etc.), difference-in-difference, focus group, interview, survey, systematic review, and other research methods.