CYSHCNET _1_.png

New Resource

Researchers, We've Updated the Primary Data Center

Here are three ways you can use the Primary Data Center to jumpstart your multi-site network studies:


  1. Download tools and resources. Our templates help at any stage, from developing research questions and funding plans to site selection and reporting. 
  2. Access and request de-identified datasets, including the ReSET National Survey of School and Health Perceptions.
  3. Request a consult. Complete this form to directly connect with the PDC’s advisors. Get feedback on your projects, ask methodological questions, receive guidance on working with Lived Experience Partners, and more. 


We understand the challenges of conducting multi-site research and look forward to helping you and your team at any stage.   

Primary Data Center
Read More

Network News

CYSHCNet Researchers Receive $5.5 Million from PCORI to Compare Transitions Across Settings for CYSHCN

After a child's hospital stay, the transition back home can be risky. This multi-site study will compare two types of hospital to home care.


Congratulations to CYSHCNet researchers, Drs. David Ming (PI), Neal deJong, and Ryan Coller for receiving a $5.5 million award from the Patient-Centered Outcomes Research Institute (PCORI). The multi-site study will compare two types of hospital-to-home transitional care.


“Past studies have shown the benefits of supporting patients and families with transitional care support,” said Principal Investigator Dr. David Y. Ming. “This will be the first study to address the knowledge gap specifically for hospital-to-home transitional care for CYSHCN.” 


Over a one-month post-discharge period, researchers will:


  1. Compare the effectiveness of two transitional care approaches—focused dose versus extended dose—in reducing return visits to the hospital or emergency department and increasing parent-reported confidence.
  2. Evaluate the impact of each type of hospital-to-home transitional care on specific CYSHCN patient groups, including those with highly-complex clinical needs and those from racial/ethnic minority groups or living in rural areas.
  3. Investigate how and why each approach to hospital-to-home transitional care is effective and for whom they work best.


The study team includes multiple community partners, including parents and caregivers with lived experience, clinicians, policymakers, and health system leaders. A community advisory board, primarily composed of a diverse group of parents/caregivers of CYSHCN, will work closely with the research team throughout the study. This collaborative effort aims to contribute to the equitable improvement of overall care for all CYSHCN transitioning from hospital to home.

Submit Your Network News

Researcher Profile

Meet Drs. Neal deJong and David Ming

CYSHCNet researchers, Neal deJong, MD, MPH (pediatrician at UNC) and David Ming, MD (hospitalist in adult medicine and pediatrics at Duke) recently spoke to us about lessons in humility about the role of academic research in helping patients and families. 


In this Q & A, they talk about lessons they learned while working locally to build a foundation for a regional network of complex care.

Q & A with Drs. Neal deJong and David Ming

Network News

New Study Examines a Resiliency Program for Fathers of CYSHCN

Fathers of children and youth with special health care needs face unique stressors. A network research study by Karen A. Kuhlthau, PhD and Daniel L. Hall, PhD et al examined an intervention adapted specifically for fathers. It involved a multiphase examination of the feasibility of a synchronous, virtual mind-body intervention.


The study found the patient-centered intervention to reducing stress and building resilience was feasible. 

Read More

Network News

CYSHCNet Researchers Look at Durable Medical Equipment Use in Children

A study by CYSHCNet researcher Arda Hotz, MD, MPH et al., categorizes durable medical equipment (DME) to understand how they are used. The team found that a significant number of kids (1 in 6) on Medicaid use DMES, and the cost is quite high, affecting nearly 20% of all Medicaid spending for outpatient, community, and home health services.


The study suggests that the information from this study could lead to further investigations. For example, it could help identify kids who are likely to need these tools, improve the timing and efficiency of providing them, and reduce errors. The study’s findings might also help in making sure these tools are used safely and effectively, improving the quality of care for kids with complex health conditions. The system proposed by Hotz et al. could be useful for future monitoring of trends in DMES use and ensuring better access to needed services.


Read the study by CYSHCNet researcher Arda Hotz, MD, MPH. et al.


Read the invited commentary, provided in part by CYSHCNet researcher Ryan Coller, MD, MPH

Submit Your Idea

Network News

Share this Link to Help Others Engage with the National Research Agenda

CYSHCNet developed an interactive learning platform based on our national research agenda on health systems. It describes and provides guidance on how to implement elements of the national health systems research agenda developed by CYSHCNet in 2019-21. It is easy to navigate and provides answers to the challenges you may face, tips on organizing the study, and examples of potential projects.

National Research Agenda Learning Platform

LANGUAGE: This project is supported by CYSHCNet, which is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government.

VIew Our Website

CYSHCNet is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government. Website

Sign up for our mailing list

Twitter  LinkedIn