Birth defects

Birth Defects Registry

The statewide birth defects monitoring and prevention program is Colorado Responds to Children With Special Needs (CRCSN). Under state law, the program receives information about children born in Colorado who are affected by birth defects, hearing loss, and other medical conditions. CRCSN is part of the National Birth Defects Prevention Network (NBDPN).

Related data: 

• Colorado Health Information Dataset (CoHID) searchable database.
• Colorado State Profile for the National Birth Defects Prevention Network.

Current Topic-Specific Programs under CRCSN:

Newborn Hearing Screening Surveillance Program 

In 1997, Colorado passed HB 97-1095, its first law regarding newborn hearing. Since then, the law on newborn hearing was modernized in 2018 under HB 18-1006. The new law was put into effect on March 16, 2020 under the rule 6 CCR 1009-6. 

• The Newborn Hearing Screening Program tracks data on hearing screening and follow-up for all babies born in Colorado up to age 3. The program receives information for infants who missed or did not pass their hearing screening from the Electronic Birth Certificate via the Vital Records Program. Providers can also contact program staff if they need a record manually imported for follow-up services.
  • Hospitals, birth centers, midwives, and pediatricians submit hearing screening data. 
  • Audiologists and audiology associates submit evaluation data.
  • The Colorado Hearing Resource Coordinators (CO-Hears) currently submit data on connection to intervention services.
• Information on submitting data and provider resources are available on the Newborn Hearing Screening Program website.
• Parents may also access resources at the above website.

General Birth Defects Resources

The National Birth Defects Prevention Network (NBDPN) is a group of birth defects programs and individuals working at the local, state and national levels in birth defects monitoring, research and prevention.

The network:

• Assesses the impact of birth defects on children, families and health care.
• Identifies ways to prevent birth defects.
• Helps families and their providers improve outcomes by improving information access and public health efforts.

National Birth Defects and Prevention Network tools and programs to educate health care providers about folic acid.

Past Projects which CRCSN participated in include:

Autism-related Projects (2002 to 2021):

Autism spectrum disorder (ASD) is a lifelong developmental disability caused by differences in the brain. People with ASD often have varied levels of difficulty with social interaction and communication and restricted or repetitive behaviors or interests.

The regional Centers of Excellence for Autism Spectrum Disorders (ASD) and other developmental disabilities were established by the U.S. Centers for Disease Control and Prevention (CDC) in 2001.These centers make up the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. 

• 2002 to 2018: Colorado participated in the Autism and Developmental Disabilities Monitoring (ADDM) Network, which collects information on the number and characteristics of children with autism and other developmental disabilities. The Colorado Autism and Developmental Disabilities Monitoring Project (CO-ADDM) was a joint undertaking with Colorado Department of Public Health and Environment and JFK Partners at the University of Colorado Denver School of Medicine. 
  • Colorado’s historical data can be found in past ADDM publications in the Morbidity and Mortality Weekly Report (MMWR). 
  • Information on the ADDM Project and past aggregate data can be found on the CDC’s website.
• 2002 to 2021: The CADDRE Network’s study on possible causes and contributing factors for developmental delays and ASD is called the Study to Explore Early Development (SEED). Colorado participated in Phases 1, 2, and 3 of the SEED Project. 
  • CRCSN participated in joint efforts with the University of Colorado Anschutz Medical Campus  between 2002 and 2021 for Phases 1, 2, and 3 of the SEED Project.
  • The University of Colorado Anschutz Medical Campus is continuing participation as a SEED Follow-Up Site. Updated information on the SEED project and data analysis outcomes can be found on the CDC SEED 1, 2 and 3 web page.

Fetal Alcohol Syndrome Project (2009 to 2014):

Fetal alcohol syndrome, now referred to as fetal alcohol spectrum disorders (FASDs), are a group of conditions that can occur in a person who was exposed to alcohol before birth. CRCSN worked with the U.S. Centers for Disease Control and Prevention (CDC) and two other states under the The Fetal Alcohol Syndrome Surveillance Network II (FASSNetII) to determine the prevalence of fetal alcohol syndrome between 2009 and 2014. Surveillance was among school children age 7 to 9 years old, since FAS is a reportable condition to CRCSN up to age ten years according to Colorado Board of Health Rules and Regulations (6 CCR 1009-7). Review data from recent CDC projects on FASDs om CDC's website.

Muscular Dystrophy Project (2002 to 2019):

Muscular dystrophy is a group of diseases that cause progressive weakness and lead to loss of muscle mass. In muscular dystrophy, genetic mutations interfere with the body's ability to make the proteins necessary to build and maintain healthy muscles.

From 2002 to 2019, Colorado participated in the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) funded by the CDC. MD STARnet collects critical information about muscular dystrophy that aims to improve care for those living with the disease.
Muscular dystrophy resources.

• For aggregate data on muscular dystrophy, please reference CDC and MD STARnet Data and Statistics.
• For the most recent data analysis which includes Colorado's data, please reference "Racial and Ethnic Differences in Timing of Diagnosis and Clinical Services Received in Duchenne Muscular Dystrophy" (published May 16, 2023).

Neural Tube Defects (1999 to 2005 and 2012 to 2020):

Neural tube defects are birth defects that affect the development of the brain and spinal cord during the first month of pregnancy. The two most common neural tube defects are spina bifida (a spinal cord defect) and anencephaly (a brain defect).
 

Under the Neural Tube Defects (NTD) Recurrence Prevention project, CRCSN staff engaged in prevention, education and outreach activities, and verifying case rates in Colorado. The program did outreach from 1999 to 2005 to improve public knowledge about using folic acid to prevent neural tube defects. The project was restarted 2012 and continued until 2020. For more information on neural tube defects, you can visit the March of Dimes or Centers for Disease Control and Prevention folic acid websites.

Birth defects contact information

Colorado Department of Public Health and Environment
Colorado Responds to Children With Special Needs
4300 Cherry Creek Drive South
CHED-CRC-A1
Denver, CO 80246