Primary Data Center

Primary Data Center

The CYSHCNet Primary Data Center (PDC) provides resources to promote network projects that collect primary data (e.g., data not already collected for other research) on topics prioritized by CYSHCN and their families. These resources include tools to make work easier for study teams conducting multi-site research, protocols and procedures to make studies more consistent across the network, and data that research teams can use to jump-start network studies. The studies are conducted at academic medical campuses across the U.S and include those using both observational (without an intervention) and interventional designs. Researchers aim to compliment the work of the CYSHCNet Secondary Data Center and the National Research Agenda. The PDC facilitates the development of proposals for outside funding from both established network researchers and researchers in the CYSHCNet Emerging Investigators program. The Primary Data Center is directed by Dr. Ryan Coller from the American Family Children’s Hospital at the University of Wisconsin-Madison. 

Vision

An engaged network that in partnership with families is efficiently conducting multisite primary research to improve CYSHCN health, aligned with the MCHB Blueprint and National Research Agenda

Mission

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

Primary Data Center is guided by:

• Advisory council
• Strategic plan
• UW personnel

Advisory council purpose

• Provide direction and set priorities for the primary data center
• Provide procedural guidance for CYSHCNet’s multisite primary research
• Guide primary data center outputs to increase multisite primary research efficiency (including data collection across sites)
• Monitor primary data centers progress, and troubleshoot challenges
• Feedback on proposal ideas using a brief pitch template. Advisory council available for consult discussion with PIs
• Create (and/or evaluate fit) of projects against the national research agenda / blueprint / 3 priority areas as defined by the Maternal and Child Health Bureau (MCHB)