Research supported by CYSHCNet aims to better understand the health care system and how it impacts children and youth with special health care needs (CYSHCN). Our researchers are working together at 18 academic medical institutions across the U.S. 

Our researchers conduct both primary research and secondary research. Primary research involves the direct collection of data through observations and experiments. Secondary research summarizes or synthesizes data and literature published by other sources.

Primary Data Center

The CYSHCNet Primary Data Center collects data on topics prioritized by CYSHCN and their families. The studies are conducted at academic medical campuses across the U.S using observational and experimental designs. Researchers aim to complement the work of the CYSHCNet Secondary Data Center and the National Research Agenda. Projects will also include 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. 

Secondary Data Center

The CYSHCNet Secondary Data Center analyzes data collected via surveys and other means about topics important to the population(s) of CYSHCN stakeholders. The findings are used to inform additional studies and projects, such as those supported by the CYSHCNet Secondary Data Center. The findings also support the research of emerging investigators, including their career development award applications. The Secondary Research Data Center is directed by Drs. Jay Berry from Boston Children’s Hospital at Harvard Medical School and Matt Hall from the Children’s Hospital Association. 


CYSHCNet’s researchers have published a number of studies since our inception is 2017. This is a list of select publications by CYSHCNet members from 2017-present time. For recent publications by members of the CYSHCNet, please visit our NCBI page here.

Secondary Data Center (SDC)

Directed by Drs. Jay Berry (Boston Children’s Hospital, Harvard Medical School) and Matt Hall (Children’s Hospital Association), the CYSHCNet Secondary Data Center catalyzes retrospective analyses on prioritized topics using population-based databases and surveys.  Findings from the analyses inform prospective, multi-site network projects.  The findings also support the research of emerging investigators, including their career development award applications.

  • All Payor Claims Databases
  • Kids’ Inpatient Database
  • IBM Watson Marketscan Medicaid Database
  • Medical Expenditure Panel Survey
  • National Inpatient Sample
  • National Survey of Children’s Health
  • Nationwide Readmissions Database
  • Pediatric Health Information System (PHIS)
Research Topics

Topics of secondary data research in children and youth with special healthcare needs and in children with medical complexity include:

  • Adverse Childhood Events
  • Chronic Medication Use
  • Disability and Social Security Income
  • Emergency and Urgent Care
  • Health Services of Adolescents and Young Adults
  • Hospital Readmissions
  • Medical Equipment and Supplies
  • Mental Health
  • Multimorbidity
  • Opioid Exposures
  • Neonatal and Post-Acute Facility Care
  • Perioperative Care and Outcomes

SDC Project Briefs

Feinstein, et al: Ambulatory Prescription Opioid Exposures in Children and Youth with Special Healthcare Needs
Feinstein, et al: Chronic Medication Use in Children Insured by Medicaid: A Multistate Retrospective Cohort Study
Dunbar, et al: Hospital Readmission of Adolescents and Young Adults with Complex Chronic Disease
Thomson, et al: Identification of Children with Higher-Severity Neurological Impairment
Coller, et al: Variation in Hospitalization Rates Following Demergency Department Visits in Children with Medical Complexity
Berry et al: The Interwoven Nature of Medical and Social Complexity in US Children
Berry & Coleman: Chronic Mental and Physical Health Conditions in Children Enrolled in Medicaid Who Receive Social Security

Read the project brief HERE

Studies we’re working on
  • Low resource use emergency department visits in children with medical complexity
  • Age trends in types of hospitals used by adolescents and young adults with complex chronic conditions
  • Characteristics and healthcare use of children using medicaid enrolled due to disability
  • Multimorbidity in children with neurological impairment 
  • Mental health conditions in children with medical complexity
  • Hospital readmission and emergency department visits after discharge from neonatal intensive care
  • Respiratory illness in children with neurological impairment
  • Quality of insurance in CYSHCN living 200-400% of the federal poverty level
  • Medical complexity and profit/loss of inpatient care for children’s hospitals
  • Healthcare encounter days of children covered y Medicaid
  • Emergency department reliance for respiratory infection in children covered by medicaid
  • Perioperative health services for children with neurological impairment
  • Home health services and personnel received by children covered by Medicaid
  • Chronic mental and physical health condition in children enrolled in Medicaid who receive Social Security income

Primary Data Project Briefs

National Research Agenda – First Paper
Coller, et al: Assessing Confidence at Times of Increased Vulnerability (ACTIV)
Perrin, Kuhlthau, et al: Transition Education & Mentorship – Uniting Peers (TEAM-UP)
Van Cleave: Co-Management Telehealth Study (CoTS)
Lail & Hassinger: PANDEMIC IS DECLARED: Early Experience from Families of Children with Medical Complexity during SARS‐COV‐2 Lockdown: Information to Drive System Change

Read the project brief HERE

Emerging Investigator Project Briefs

Ames & Bastianelli: Assessment of caregiver experiences and unmet healthcare needs following discharge home after a critical illness in a child or youth with special healthcare needs

Read the project brief HERE

Werner & Katz: Creation of an Adaptive Taxonomy of Barriers and Facilitators to In‐Home Care of Children with Cerebral Palsy

Read the project brief HERE

Easterlin & Agoratus:| Understanding the effects of chronic medical procedures in children with Inflammatory Bowel Disease (IBD): A qualitative study of patient, parent, and nurse perspectives

Read the project brief HERE

Lindly & Crossman: High Quality Health Care, IDEA Services, and Adverse Family Impact for US CSHCN:  The Role of Prematurity in Early Childhood
High Quality Health Care, IDEA Services, and Adverse Family Impact for US CSHCN: The Role of Prematurity in Early Childhood
Hotz: Use of Durable Medical Equipment and Supplies in Children and Youth with Special Healthcare Needs