Research
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.
Publications
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)
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
Read the project brief HERE
| SafeCare@Home4Kids– improving the safety of home healthcare for children with medical complexity and disability | Development of a Resiliency Program for Fathers of Children and Youth with Special Health Care Needs (CYSHCN) |
| Best Practices for Engaging Patient, Youth, & Family Leaders as Research Partners | Family Engagement |
| Quality of Life Measurement | Families’ Experiences of Changes in Health Care Utilization for Children with Special Health Care Needs During the COVID-19 Pandemic |
| COVID-19 Network of Networks Expanding Clinical and Translational approaches to Predict Severe Illness in Children (CONNECT to Predict SIck Children) | Mental and Behavioral Health Use and Need by Children with Medical Complexity and their Families |
| Care Integration | Telemedicine Use in Children with Medical Complexity |
| Early Introduction of Palliative Care Among Families of Children with Medical Complexity | Caregiver Decision-Making and Advice Regarding Tracheostomies in Preterm Infants with Severe Bronchopulmonary Dysplasia |
| Partnering to Advance Health and Well-being of Children with Medical Complexity and Their Families | An Enhanced Home-Based Telemedicine Program Using Remote Examination Devices for Children with Medical Complexity: a Single-Center Randomized Controlled Trial |
| A Socioecological Approach to Social Complexity, Family Functioning, and Community-Based Systems of Care Among Children with Medical Complexity | Children with Medical Complexity (CMC) Caregiving Networks in Socioeconomically Disadvantaged Neighborhoods |
| Ecological Momentary Assessment of Outcomes after Critical Illness in Children with Medical Complexity | Advancing Care for Respiratory Illness in Children with Medical Complexity (R34) |
| Perception of discrimination in CMC based on disability or diagnosis – a Scoping review – phase 1 of 3-part study |
Primary Data Project Briefs
Read the project brief HERE
Emerging Investigator Project Briefs
Read the project brief HERE
Read the project brief HERE
Read the project brief HERE
High Quality Health Care, IDEA Services, and Adverse Family Impact for US CSHCN: The Role of Prematurity in Early Childhood