Children and Youth with Special Health Needs (CYSHN)
Programs
- Birth Defects Monitoring and Analysis
- Early Hearing Detection and Intervention
- Follow Along Program
- Longitudinal Follow-up for Newborn Screening Conditions
Related Sites
Contact Info
Data Related to Children and Youth with Special Health Needs
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 and youth with special health needs and their families.
- As part of this grant, MDH completes a comprehensive statewide needs assessment.
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.
- Nationally, this survey is used to gather data on prevalence and health of children and youth with special health needs and their families.
- An interactive data query can be found on the data resource center for child and adolescent health webpage.
- 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 respond to their needs and concerns.
Data related to Birth Defects Monitoring and Analysis
About the CHSTRONG KIDS Survey
The CHSTRONG KIDS Survey is currently being sent to parents and caregivers of children born with a congenital heart defect. This survey asks questions about both the caregiver and the child born with CHD regarding their healthcare use, education, social experiences, and quality of life. If you receive a survey, please consider completing it.
The Birth Defects Information System (BDIS) began monitoring birth defects in 2005. 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.
- Data on twelve of the conditions tracked in BDIS are available from Minnesota Public Health Data Access, When possible, results are split by maternal age and maternal race/ethnicity. For some conditions, you are able to view data maps, submit queries and download data from the portal.
- The National Birth Defects Prevention Network has an articles of potential interest database going back to 1998, which includes data for 45 selected birth defects in Minnesota
Data related to Longitudinal Follow-Up
About the Newborn Screening Propel survey
The Newborn Screening (NBS) Propel survey is being sent to parents and caregivers of children diagnosed with congenital cytomegalovirus (cCMV). The information from the NBS Propel survey will help MDH identify ways to improve the newborn screening system for all Minnesota infants and their families. If you receive a survey, please consider completing it.
The MDH Newborn Screening Program collects information about infants and children diagnosed with over 60 conditions that are included on the newborn screening panel. After a child’s health care provider diagnoses the condition, they report it to MDH [Minn. Stat. § 144.125, subdivision 1(b)]. We use the information that we gather to know if children and their families get the support and resources they want and need.
- Data dashboards on newborn screening conditions are available from the public health lab on the Newborn Screening Data Summary page. The dashboards include the number of newborns screened and the conditions identified.
- Data from the sickle cell data collection program is available on the Sickle Cell Data and Reports page. The page has both statewide and national reports.
- The Early Childhood Longitudinal Data system (ECLDs) provides information on the development and learning of young children. It is maintained by the division of early learning at the Minnesota Department of Education, but contains data from multiple agencies, including the Department of Health.
- CDC compiles national hearing screening and follow up data on their Data and Statistics About Hearing Loss in Children page.