Resources for Researchers

The Primary Data Center helps researchers design and implement multi-site studies that benefit CYSHCN and their families.

We help you strengthen your research.

Conducting multi-site research can be challenging. PDC resources, tools, and consultations can jump-start network studies and make your work easier and more consistent across sites.

PDC consultations and tools are available at any stage in the research process. Start by accessing research templates, tools, and resources and/or requesting a free consultation to meet with us to discuss your research.

About the PDC

CYSHCNet is a national research network that studies health systems for children and youth with special health care needs (CYSHCN). We’re unique because all of our researchers collaborate with lived experience partners, such as families or CYSHCN themselves.

The PDC is a sub-group of CYSHCNet. The PDC helps researchers:

  • Design observational and interventional studies
  • Develop proposals for outside funding
  • Find and use resources that make multi-site research easier and more effective
  • Understand how research topics fit into the areas that families and funders care about
  • Work effectively with lived experience partners and academic partners at other sites
  • Better incorporate diversity, equity, and inclusion in research

The Primary Data Center is directed by Dr. Ryan Coller from the American Family Children’s Hospital at the University of Wisconsin-Madison.

The PDC works with established network investigators and early-career researchers from CYSHCNet’s Emerging Investigators program. Our consults complement the work of the CYSHCNet Secondary Data Center and align with the National Research Agenda for CYSHCN.

Mission 

Catalyze a portfolio of efficiently conducted, federally-funded network research, prioritizing multisite interventions.

Vision

An engaged network that in partnership with families is efficiently conducting multisite primary research to improve CYSHCN health, aligned with the Maternal and Child Health Bureau (MCHB) Blueprint and National Research Agenda for Children and Youth with Special Health Care Needs

Advisory Council

  • The PDC receives direction and sets priorities with the help of an advisory council. The council provides the PDC with guidance on:
  • Procedures for conducting multi-site primary research
  • Outputs to increase multisite primary research efficiency (including data collection across sites)
  • Progress toward the PDC vision
  • How to troubleshoot challenges