CYSHCNet to launch a National Research Agenda for
Children and Youth with Special Health Care Needs

The CYSHCNet National Research Network will convene its first annual meeting of the Executive Committee and governing boards in April to discuss and formulate a national research agenda for children and youth with special healthcare needs. The group is comprised of experts in the fields of medicine, insurance and finance, policy, behavioral health, nursing, patient-centered medical home, physical therapy, transition to adulthood, technology, and, most importantly, parent experts.

Funded by the Maternal and Child Health Bureau (MCHB) in September 2017, the Network is tasked with creating a national family-engaged research agenda that addresses gaps in research that most impact CYSHCN and their families. The Agenda will focus on the MCHB Core Outcomes and the Association of Maternal and Child Health Programs (AMCHP) national standards for CYSHCN.  To achieve the goal, Network directors are seeking input from families, patients, and experts through a comprehensive survey that will go out this month.

The Network’s National Research Agenda is poised to revolutionize CYSCHN research through its partnership with five major national institutions and expert researchers in the field of children with special healthcare needs and children with medical complexity (CMC). The partners include Children’s Hospital Colorado; Boston Children’s Hospital; Mass General Children’s Hospital; Mattel Children’s Hospital at UCLA; and Family Voices, a national advocacy organization for families. Five other sites serve as Consultative Research Sites (CRS) and provide support to the Network that include serving on committees, reviewing proposals, and leading multi-site studies. The sites include Lurie Children’s Hospital, Oishei Children’s Hospital, Munroe Carell Jr. Children’s Hospital, American Family Children’s Hospital, and Children’s Memorial Hermann Hospital.

Currently, five multi-site research projects are underway throughout the country and a sixth is preparing to launch. The projects range from studies using telehealth technology to an analysis of emergency department admissions for CYSHCN. Parents of CYSHCN will be embedded in each research project to ensure that families’ expertise is included in every aspect from planning to data collection and analysis.