This page contains many links and resources to assist you in understanding screening available for medical conditions in your newborn. If you are unsure where to start, consider looking through the “Additional Resources” tab. Additionally, feel free to contact the Colorado genetic navigator at Coloradogenetic@gmail.com.

Colorado Newborn Screening Program (NBS)

Contact this group if/when:

  • You need NBS (newborn screening) results
  • Your doctor has told you your child has a positive newborn screen and you are having trouble seeing a specialist for follow-up
  • To get lab records for proof of condition when applying for SSI and Medicaid
  • For assistance with medical records

*Having all your child’s medical records is very useful as doctors and clinics often want lab and medical records before seeing a child. It is especially useful if a family moves to another state and has to reestablish care.

Colorado Newborn Screening Program
Newborn screening | Department of Public Health & Environment (colorado.gov)

Phone: 303-692-3675
Phone (alt.): 303-691-4026
Fax: 303-691-4008
Email: cophe_conbs@state.co.us

*In Colorado, babies undergo a second screening step when they are around two weeks old. This second screening usually happens in a health care provider’s office. It can help find babies who have conditions that are hard to detect in the first days of life but that still benefit from early treatment or intervention.

Colorado Department of Public Health & Environment Newborn Screening Laboratory (general questions or to obtain copy of NBS results)
Phone number: 303-692-3670

Colorado List of NBS Conditions 

Early Hearing Detection and Intervention (EHDI)

Contact this group if/when:

  • You have concerns regarding your child’s ability to hear
  • Your child has not had a hearing screening 
  • You are looking for support when your child has tested positive for hearing loss 

Colorado EHDI Screening

Phone: 303-692-2603
Colorado EHDI Screening Website

Find a Genetics Provider

Contact this group if/when:

  • You are in need of assistance to find a genetic clinic near you 

Find a Clinic – Mountain States Genetics

Children’s Hospital Colorado – Anschutz Medical Campus

13123 East 16th Ave., Aurora, CO 80045
Main Hospital 720-777-1234
Genetics and Inherited Metabolic Diseases 303-724-2370
Special Care Clinic 720-777-6739
Developmental Pediatrics 720-777-6630

Additional Resources

Below you will find a number of different links to resources that may help in navigating the birth and newborn time period:

Colorado Genetics Navigator emailColoradogenetic@gmail.com

Colorado Genetic Connections Facebook Group

Mountain States Regional Genetics Network (MSRGN) Home

MSRGN Colorado State Team Page

MSRGN Facebook

MSRGN Twitter

Red Flags 4 Genetics Handout (English)

Red Flags 4 Genetics Handout (Spanish

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Contact if: 

  • You need NBS (newborn screening) results
  • Your doctor has told you your child has a positive newborn screen, and you are having trouble seeing a specialist/follow-up
  • To get lab reports for proof of condition when applying for SSI and Medicaid
  • For assistance with medical records

*Having all your child’s medical records is very useful as doctors and clinics often want lab and medical records before seeing a child. It is especially useful if a family moves to another state and must reestablish care.

Newborn screening includes a series of screenings: Some examples include blood spot screening, pulse oximetry screening for critical congenital heart disease, and hearing screening.

***Note that there is more to screening than just the examples listed here. Newborn screening (NBS) is an interconnected system of organizations, programs, and experts who work together to make sure that caregivers and health professionals have the information they need to understand NBS and know where to find more information when needed.

Navigate NBS Booklet

English NBS Home

Spanish NBS Home

English NBS Brochure for Colorado

Spanish NBS Brochure for Colorado

Expecting Health

Baby’s First Test- Colorado NBS List

HRSA Newborn Screening Information

Federal Agencies

Centers for Disease Control and Prevention (CDC) Newborn Screening Portal

Advisory Committee on Heritable Diseases in Newborns and Children

Recommended Uniform Screening Panel (RUSP)

National Institutes of Health (NIH)

National Library of Medicine (NLM)

Professional and Medical Organizations

Newborn Screening Translational Research Network

ActSheets (guide & resources for healthcare providers)

NewSTEPs

Association of Public Health Laboratories (APHL)

APHL Statements on Newborn Screening

AWHONN Statement on Newborn Screening

NSGC Statement on Newborn Screening

SIMD Statement on Newborn Screening

Support/Advocacy Organizations

Screening Technologies and Research in Genetics (STAR-G)

Save Babies Through Screening Foundation

Genetic and Rare Disease Information Center

Support for Colorado NBS Conditions

National PKU Alliance

Organic Acidemia Association

Fatty Acid Oxidation (FOD) Support Group

Sickle Cell Disease Association of America

Homocystinuria Network (HCUNetwork)

The MAGIC Foundation

CAH Cares

Cystic Fibrosis Foundation

SCID Compass (Severe Combined Immune Deficiency)

National MPS Society

Association for Glycogen Storage Disorders

National Urea Cycle Disorders Foundation

Cure SMA

 

 

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