Children and Youth with Special Health Care Needs Research Network (CYSHCNet)

Children and youth with special health care needs (CYSHCN) deserve a better health care system with health equity at its core. Well-coordinated high-impact multi-site research is needed to improve this system. Research priorities have been well described but projects addressing priorities need to be accomplished. Special emphasis is needed on projects to improve the state of health measurement for CYSHCN improve the integration of care across multiple service sectors and investigate the measurement and impact of family engagement. Finally increasing the diversity of the CYSHCN research workforce is needed.

Goals

We propose to:

(1) Optimize existing infrastructure to support a multi-site CYSHCN research portfolio through coordinating and supporting research teams promoting best practices and minimum standards for multisite research including a centralized data acquisition system connecting research proposals with external funders and maintaining youth and family partnership at all levels;

(2) Continue conducting interdisciplinary multi-site research aligned with published priorities by promoting multi-site studies across the range of theme areas conducting research in three critical areas identified by MCHB and maintaining and revising the national research agenda; and

(3) train and mentor emerging CYSHCN investigators from traditionally underserved backgrounds by enhancing existing early investigator small grants programs through collaboration with Underrepresented in Medicine (UiM) pediatric training programs implementing a new Research Pathway Program and expanding curricular offerings.

Proposed Activities and Target Population

We will expand our already robust inclusive research infrastructure that includes a National Coordinating Center (NCC) four Collaborative Research Entities (CREs) and 11 Consultative Research Sites (CRSs) Primary and Secondary Data Programs Equity and Dissemination Cores and 7 Theme Teams to promote projects aligned with national research agenda topics. These entities will work together to stimulate multi-site intervention[1] oriented externally-fundable research projects. We will establish a centralized data acquisition system and continue to conduct research tightly aligned with current published research priorities. New research will include measures of health and well-being cross-sector integration of services and family engagement. We will partner with programs serving underserved populations to achieve this work. We will continue our national training program for CYSHCN researchers specifically recruiting UiM investigators and expanding curricula and mentoring to investigators from sectors outside academic medicine. Targeted populations will include YSHCN including medical complexity and underserved racial/ethnic and socioeconomic groups.

Coordination

A Leadership Team and Steering Committee (SC) inclusive of youth and family leaders and representatives from the NCC CREs and CRSs will set policy and oversee Network activities in cooperation with MCHB. CREs and CRSs will provide the primary settings for projects.

Products

1. Well-coordinated infrastructure to support family-partnered multi-site studies;
2. At least 15 manuscripts aligned with national research agenda priorities;
3. An updated national research agenda;
4. Dissemination of findings through academic and non-academic outlets;
5. A website webinars and local and national presentations to disseminate findings;
6. A research education and small grants program for emerging investigators including those from UiM populations.