Data Related to Children and Youth with Special Health Needs

The Title V Maternal and Child Health (MCH) Block Grant designed to help states improve the health and well-being of women, children and youth, including children with special health needs (CYSHN), and their families. As a part of the Title V MCH Block Grant, the Minnesota Department of Health is required to complete a comprehensive statewide Needs Assessment that reports on the health status needs of MCH populations, including CYSHN and their families.

The National Survey of Children's Health (NSCH) provides data on physical and mental health, access to quality health care, and the child's family, neighborhood, school, and social context. On a national level, this survey is used to gather data on prevalence and health of CYSHN and their families, including indicators that measure the functioning of the system for CYSHN. An interactive data query for the NSCH can be found on the Data Resource Center for Child and Adolescent Health's website.

The Minnesota Student Survey provides a comprehensive picture of Minnesota youth by asking questions about school, activities, and health. Responses to these questions can be used by educators, parents, communities, and youth themselves to identify the strengths of young people and to respond to their needs and concerns.

Data Related to Birth Defects

The Birth Defects Information System (BDIS) began monitoring birth defects in two counties in 2005. Since 2010, BDIS has been expanding to cover the whole state. Because most of the conditions we track are rare, we combine 5 years' of data to provide more stable estimates.

• A list of BDIS Conditions can be found on the Birth Defects Information System webpage. For information about a specific birth defect, click on the link for the body system (i.e. cardiovascular, central nervous system, etc.) and select the condition of interest.
  • The most recent 5-year prevalence estimate is available on the condition-specific page for Hennepin and Ramsey counties, as well as an estimate of the expected number of cases born each year in MN.
• Data on twelve of the conditions tracked in BDIS are available from Minnesota Public Health Data Access, a web-based data access portal. When possible, results are split out by maternal age and maternal race/ethnicity. As more data become available, you will be able to view data maps, submit queries and download data from the portal. To learn more about Minnesota's Birth Defects data, please read About the Data.
• Minnesota's annual program summary and data for 45 selected birth defects are included in the Annual Report of the National Birth Defects Prevention Network in a special issue of Birth Defects Research Part A. Five-year counts and prevalence per 10,000 live births are available in the Birth Defects Data and Directory.
• National Birth Defects Prevention Study (NBDPS) - The National Birth Defects Prevention Study is the largest study in the U.S. researching the causes of birth defects. The study began in 1996 when Congress directed the CDC to establish the Centers for Birth Defects Research and Prevention in 10 states (AR, CA, GA, IA, MA, NJ, NY, NC, TX, and UT). Currently, the Study is in its wind-down phase and will be replaced by The National Birth Defects Case Control Study, which will use the knowledge gained from the NBDPS as its foundation. The website includes information about the study design, research approaches and findings from the NBDPS.

Other Birth Defects-Related Reports & Publications

• Mai CT, Isenburg JL, Canfield MA, Meyer RE, Correa A, Alverson CJ, …Kirby RS, NBDPN (2019). National Population-based Estimates for Major Birth Defects, 2010-2014, Birth Defects Res 111(18): 1420-1435
• Short TD, Stallings EB, Isenburg J, O'Leary LA, Yazdy MM, Bohm MK, …Reefhuis, J (2019). Gastroschisis Trends and Ecologic Link to Opioid Prescription Rates—United States, 2006-2016, MMWR 68(2): 31-36
• Cragan JD, Isenburg JL, Parker SE, Alverson CJ, Meyer RE, Stallings EB, …Mai CT (2016). Population-based microcephaly surveillance in the United States, 2009 to 2013: An analysis of potential sources of variation (PDF). Birth Defects Res A Clin Mol Teratol 106(11): 972-982
• Mai CT, Cassell CH, Meyer RE, Isenburg J, Canfield MA, Richard R, …Kirby RS (2014). Birth defects data from population-based birth defects surveillance programs in the United States, 2007 to 2011: Highlighting orofacial clefts (PDF). Birth Defects Res A Clin Mol Teratol 100: 895-904
• Banerjee E, Zabel E, and Alexander B (2012). Comparison of Defects Identified through Minnesota's Birth Defects Information System and Vital Records, 2006-2008, Journal of Registry Management 39(1): 8-12
• Frohnert BK, Lussky RC Alms MA, Mendelsohn NJ, Symonik DM, and Falken MC (2005). Validity of Hospital Discharge Data for Identifying Infants with Cardiac Defects, Journal of Perinatology 25: 737-742

Data Related to Newborn & Child Longitudinal Follow-Up

The Newborn Hearing Screening Advisory Committee releases the Minnesota Early Hearing Detection & Intervention Annual Report. This report includes data related EHDI goals, indicators, and benchmarks. This information is based on the national goals, program objectives, and performance measures for the Early Hearing Detection and Intervention Tracking and Surveillance System from the Centers for Disease Control and Prevention (CDC).

Data Related to Autism Spectrum Disorder

The CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network collects information on over 300,000 8-year-old children across 16 states to determine the prevalence of autism spectrum disorder in the United States. This study found an estimated 1 in 59 eight-year-old children have autism spectrum disorder (ASD). Minnesota is one of the states who participated in the 2018 ADDM Network study. Minnesota has also conducted its own autism studies, specifically investigating prevalence rates among our Somali community. Summaries of all major studies can be found at the Minnesota Department of Health's Autism Spectrum Disorder Reports website.