The network can share de-identified datasets with other researchers.
We can provide access to and experience with the following datasets to support your research.
- ReSET National Survey of School and Health Perceptions: This dataset comprises data about 1,132 children and youth with special healthcare needs and their caregivers.
- Family Circle Dataset
- Kids’ Inpatient Database
- National Inpatient Sample
- State Inpatient Databases
- National Readmission Database
- National Survey of Children’s Health
- Medical Expenditure Panel
- Pediatric Health Information System
- Merative Marketscan Medicaid Database
A growing list of network publications is available on our Network Dashboard.
The following templates are available for download to assist network researchers and emerging investigators in planning for federally funded network research.
The goals of the inventory of measures for research in CYSHCN populations:
- Assist users with rapidly identifying CYSHCN measures of reasonable quality to include in their work.
- Promote increased measure harmony / consistency across research studies.
The included measures reflect consensus of the Research Network’s Primary Data Center Advisory Council, and are not intended to reflect the gold-standard or only way to measure a construct. They are not intended to be all-inclusive.
Click the measure name to learn more, or compare measures by checking multiple boxes.
| Name | Domain | Topics | Age | Data type | |
|---|---|---|---|---|---|
| Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) | Quality of Life |
Emotional Distress Physical Function – Mobility Physical Health Scoping review Social Health |
Ages 2-5 Ages 6-11 Ages 12-18 |
Parent/caregiver Proxy, Patient | |
| UW Family medical caregiver benefit | Caregiving at Home and Caregiving Experience |
Benefits of Caregiving |
Parent/caregiver Proxy | ||
| UW Family medical caregiver stress | Caregiving at Home and Caregiving Experience |
Caregiver Stress |
Parent/caregiver Proxy | ||
| Six-Item Food Security Module | Health Equity |
Food Insecurity |
Parent/caregiver Proxy | ||
| PROMIS Social Health | Family Health |
Family Relationships Peer Relationships |
Parent/caregiver Proxy, Patient | ||
| PROMIS Physical Health | Child Health, Vulnerability, and Complexity |
Asthma Impact Fatigue Itch (PIQ-C) Pain Physical Activity Physical Function – Mobility Physical Stress Experience Sleep Strength Impact |
Parent/caregiver Proxy, Patient | ||
| PROMIS Mental Health | Child Health, Vulnerability, and Complexity Family Health |
Mental Health Physical Health Social Health |
Parent/caregiver Proxy | ||
| PROMIS Pediatric Profiles | Child Health, Vulnerability, and Complexity Family Health |
Anxiety Depressive Symptoms Fatigue Pain Peer Relationships Physical Function – Mobility |
Parent/caregiver Proxy, Patient | ||
| PhenX Toolkit Social Determinants of Health Collections | Family Health Health Equity |
Social Determinants of Health |
Parent/caregiver Proxy | ||
| Pediatric Medical Complexity Algorithm | Child Health, Vulnerability, and Complexity |
Child Medical Complexity |
Administrative | ||
| Pediatric Integrated Care Survey (PICS) | Care Planning and Coordination Medical Home and Comprehensive Care Models |
Access to Care Care Goal Creation/Planning Communication Between Health Care Provider and Parent Family Impact Team Functioning/Performance/Quality/Connectivity |
Parent/caregiver Proxy | ||
| National Survey of Children’s Health | Access to Services and Supports Care Planning and Coordination Caregiving at Home and Caregiving Experience Child Health, Vulnerability, and Complexity Family Health Financing, Payment Models, and Insurance Medical Home and Comprehensive Care Models |
Child's Health Child's Learning Child's Schooling and Activities Experiences with Health Care Providers Family and Household Characteristics Health Care Services Health Insurance Coverage Nutrition and Physical Activity Providing for Child's Health |
Parent/caregiver Proxy | ||
| Family-Centered Care Assessment Tool (FCCA) | Access to Services and Supports Care Planning and Coordination Medical Home and Comprehensive Care Models |
Care Setting Practices and Policies Community Systems of Services and Supports Family/Provider Partnership |
Parent/caregiver Proxy | ||
| Family Management Measure (FaMM) | Care Planning and Coordination Caregiving at Home and Caregiving Experience Family Health |
Child's Daily Life Condition Management Ability Condition Management Effort Family Life Difficulty View of Condition Impact |
Parent/caregiver Proxy | ||
| Family Experiences with Care Coordination (FECC) | Care Planning and Coordination |
Care Coordination Services Messaging Protocols/Plans |
Parent/caregiver Proxy | ||
| Family Caregiver Activation in Transitions (FCAT) | Caregiving at Home and Caregiving Experience |
Caregiver Self-Efficacy |
Parent/caregiver Proxy | ||
| Discrimination in Medical Settings Scale | Health Equity |
Discrimination |
Patient | ||
| Coping Health Inventory for Parents (CHIP) | Caregiving at Home and Caregiving Experience |
Family Integration and Optimism Social Support and Self-esteem Understanding the Medical Situation |
Parent/caregiver Proxy | ||
| Complex Chronic Conditions | Child Health, Vulnerability, and Complexity Technology and Care |
Child Medical Complexity Technology Dependence |
Administrative | ||
| CMS AHC Health Related Social Needs | Family Health Health Equity |
Caregiver Mental Health Disabilities Education Employment Family and Community Support Financial Strain Food Insecurity Housing Instability Interpersonal Safety Physical Activity Substance Use Transportation Problems Utility Help Needs |
Parent/caregiver Proxy | ||
| Caregiver General Self-Efficacy Scale | Caregiving at Home and Caregiving Experience |
Caregiver Self-Efficacy |
Parent/caregiver Proxy | ||
| Newest Vital Sign (NVS) | Health Equity |
Caregiver Health Literacy |
Parent/caregiver Proxy | ||
| Brief Health Literacy Screener (Chew Items) | Health Equity |
Caregiver Health Literacy |
Parent/caregiver Proxy |
Measures selection principles can be found here. The domains were informed by the Health System Research Priorities for CYSHCN and the MCHB Blueprint for Change.
Additionally, the inventory contains all items from the research network’s scoping literature review on quality of life for CYSHCN.