Data Sources

Centers for Medicare and Medicaid Services (CMS)

CMS produces claims data about Medicare and Medicaid for use in research. Records contain services billed to Medicare or Medicaid during times of enrollment, and include information on diagnoses, procedures, prescriptions, providers, and the patient.

Medicare

• Medicare is a public health insurance program managed by CMS that provides medical and prescription coverage for enrollees. Medicare provides health insurance to individuals over age 65, plus adults younger than 65 if they meet disability requirements. The Medicare data is of individuals of all ages and includes all autistic people and people with intellectual disability in the data, as well as a random sample of about three million people without autism or intellectual disability. We have Medicare claims from years 2014-2020.

Medicaid

• Medicaid is a medical assistance program run through federal-state partnerships that covers people who make below a certain amount of income, as well as by disability status. Each state has its own Medicaid services. Medicaid covers medical services and services to support people living in the community. Our Medicaid data includes information about individuals of all ages and includes all autistic people and people with intellectual disability in the data, as well as a random sample of 3.4 million people who are not autistic and don’t have an intellectual disability. We have Medicaid claims from years 2008-2020.
• Example publications from our team:
  • Schott, W., Tao, S., & Shea, L. (2023). Prevalence of high-risk conditions for severe COVID-19 among Medicaid-enrolled children with autism and mental health diagnoses in the United States. Autism, 13623613231155265.
  • Roux, A. M., Tao, S., Marcus, S., Lushin, V., & Shea, L. L. (2022). A national profile of substance use disorder among Medicaid enrollees on the autism spectrum or with intellectual disability. Disability and Health Journal, 15(2), 101289.

Healthcare Cost and Utilization Project

The Healthcare Cost and Utilization Project (HCUP) produces a group of longitudinal hospital healthcare databases and software. It brings together data from state data organizations, hospital associations, private data organizations, and the Federal government. HCUP is sponsored by the Agency for Healthcare Research and Quality. We use several HCUP data sources that captures different types of hospital visits, including emergency department visits and inpatient hospitalizations.  Find out more about HCUP here HCUP-US Overview (ahrq.gov) and here HCUP Fast Stats Data Tools | AHRQ Data Tools

National Inpatient Sample

• The National Inpatient Sample (NIS) is a nationally representative sample discharge data and is the largest database of all-payer inpatient care in the U.S. NIS is an all-payer inpatient database of U.S. hospital inpatient stays, weighted to estimate national inpatient utilization and experiences. NIS 2020 captured more than 35 million stays from 48 states plus the District of Columbia, covering 98% of the U.S. population. The NIS sample excludes rehabilitation and long-term acute care hospitals. The unit of analysis in NIS is index stays, not individuals. We have NIS from years 2008-2020. More information about the NIS can be found at www.hcup-us.ahrq.gov/nisoverview.jsp
• Example publications from our team using NIS include:
  • Rast, J. E., Roux, A. M., Fernandes, S. J., D’Silva, V., & Shea, L. L. (2022). Hospital inpatient stays for autistic youth and youth with other disabilities. Pediatrics, 149 (Supplement 4).
  • Rast, J. E., Fernandes, S. J., Schott, W., & Shea, L. L. (2023). Disparities by Race and Ethnicity in Inpatient Hospitalizations Among Autistic Adults. Journal of Autism and Developmental Disorders, 1-8.

National Emergency Department Sample

• The National Emergency Department Sample (NEDS) is a nationally representative sample of emergency department visits from the Healthcare Cost and Utilization Project (HCUP), Agency for Healthcare Research and Quality (AHRQ) (NEDS, 2020). NEDS is an all-payer database of U.S. emergency department visits. NEDS 2020 captured more than 120 million ED visits from 40 states and the District of Columbia, covering 85% of the U.S. population. The unit of analysis in NEDS is index visits, not individuals. We have NEDS from years 2008-2020. More information about NEDS can be found at https://hcup-us.ahrq.gov/nedsoverview.jsp
• Example publications from our team using NEDS include:
  • Schott, W., Tao, S., & Shea, L. (2022). Emergency visits for autistic children and children with ADHD. Pediatrics, 149

National Readmission Database

• The National Readmission Database (NRD) is a nationally representative sample of all-payer hospital inpatient stays with individual-level linkage of all admissions in a given year. NRD allows for analysis of hospital readmissions, though readmissions included in the database may or may not be related. In 2020, NRD captured approximately 35 million stays. The data include all information available in the NIS and is sampled form the same source. We currently have data from years 2019-2020. More information about NRD can be found at NRD Overview (ahrq.gov)

Medical Expenditures Panel Survey

The Medical Expenditure Panel Survey (MEPS) is a nationally representative survey of health, health service use, medical events, health insurance coverage, and pharmacy use in noninstitutionalized children and adults in the U.S. It is conducted by the Agency for Healthcare Research and Quality (AHRQ) in the U.S. Department of Health and Human Services (HHS). MEPS participants are identified as participants from the previous years’ National Health Interview Survey (NHIS), a national study conducted by the U.S. Census Bureau designed to present a yearly snapshot of the health of the nation. MEPS is a panel design survey, conducting five rounds of interviews with the same person over two years. Whole families were asked to participate in MEPS, and parents or caregivers were interviewed about the health and healthcare experiences of their children ages 0-17. MEPS can be used to produce yearly national estimates of characteristics and experiences, or for longitudinal follow-up of change over a two-year period. MEPS has several components. To learn more about MEPS, visit https://www.meps.ahrq.gov/mepsweb/

Example publications from our team include:

• Rast, J. E., Roux, A. M., Anderson, K. A., Croen, L. A., Kuo, A. A., Shea, L. L., and Shattuck, P. T. National Autism Indicators Report: Health and autism. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University, November 2020.
• Rast, J.E., Garfield, T., Roux, A.M., Koffer Miller, K.H., Hund, L.M., Tao, S., Kerns, C.M., Rosenau, K.A., Hotez, E., Anderson, K.A., Shattuck, P.T., and Shea, L.L. National Autism Indicators Report: Mental Health. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University, August 2021.

National Survey of Children’s Health

The National Survey of Children’s Health (NSCH) is a cross-sectional, nationally representative survey designed to provide national estimates on the health and well-being of United States children from parent or caregiver report. The NSCH is designed by the Health Resources and Services Administration’s Maternal and Child Health Bureau and conducted by the U.S. Census Bureau. The NSCH asks about health, healthcare services, health insurance, and school and household activities. Parents or caregivers participated in the survey on behalf of their children ages 0-17. The NSCH was redesigned in 2016 and has been conducted every year since. More information about the NSCH can be found by visiting https://www.census.gov/programs-surveys/nsch.html or https://www.childhealthdata.org/.

Example publications from our team include:

• Ezeh, T. H., Lee, B. K., & Rast, J. E. (2022). The Medical Home and Use of Mental and Non-mental Specialty Services Among Children with Autism Spectrum Disorder (ASD). Journal of Autism and Developmental Disorders, 1-11.
• Rast, J. E., Anderson, K. A., Roux, A. M., & Shattuck, P. T. (2021). Medication use in youth with autism and attention-deficit/hyperactivity disorder. Academic pediatrics, 21(2), 272-279. Medical Expenditures Panel Survey

Rehabilitation Services Administration Case Service Report

The Rehabilitation Services Administration Case Service Report (RSA-911) is administrative data collected annually by state Vocational Rehabilitation agencies, which provide employment support services for people with disabilities. The data collected focuses on disability, demographics, service interventions, and employment at closure. The topic focused on is employment and employment services. The RSA-911 is sponsored by the Department of Education (DOE): Office of Special Education and Rehabilitation Services. We currently have data from years 2003-2019. Find out more about the RSA here RSA-911 | Rehabilitation Services Administration (ed.gov)

Example publications from our team:

• Roux, A. M., Rast, J. E., Anderson, K. A., Garfield, T., & Shattuck, P. T. (2021). Vocational rehabilitation service utilization and employment outcomes among secondary students on the autism spectrum. Journal of Autism and Developmental Disorders, 51, 212-226.
• Roux, A. M., Rast, J. E., & Shattuck, P. T. (2020). State-level variation in vocational rehabilitation service use and related outcomes among transition-age youth on the autism spectrum. Journal of Autism and Developmental Disorders, 50, 2449-2461