States Oregon
Conditions Screened
Oregon currently screens for 45 conditions
The Oregon Program
Each state runs its program differently, for more detailed information please visit their website here.
Download Brochure
View the Oregon Brochure »
What Conditions are Screened For in Oregon?
Amino Acid Disorders
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Argininemia (ARG)
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Citrullinemia, Type I (CIT)
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Classic Phenylketonuria (PKU)
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Homocystinuria (HCY)
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Maple Syrup Urine Disease (MSUD)
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Tyrosinemia, Type I (TYR I)
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Tyrosinemia, Type II (TYR II)
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Tyrosinemia, Type III (TYR III)
Endocrine Disorders
Fatty Acid Oxidation Disorders
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Carnitine Uptake Defect (CUD)
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Glutaric Acidemia, Type II (GA-2)
Hemoglobin Disorders
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Sickle Cell Anemia (Hb SS)State preferred name: Sickle cell disease
Lysosomal Storage Disorders
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Fabry (FABRY)
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Gaucher (GBA)
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Mucopolysaccharidosis Type-I (MPS I)
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Pompe (POMPE)
Organic Acid Conditions
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2-Methyl-3-Hydroxybutyric Acidemia (2M3HBA)
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2-Methylbutyrylglycinuria (2MBG)
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3-Methylglutaconic Aciduria (3MGA)
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Glutaric Acidemia, Type I (GA-1)
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Isobutyrylglycinuria (IBG)
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Isovaleric Acidemia (IVA)
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Malonic Acidemia (MAL)
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Propionic Acidemia (PROP)
Other Disorders
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Adrenoleukodystrophy (ALD)State preferred name: X-Linked Adrenoleukodystrophy (ALD)
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Biotinidase Deficiency (BIOT)
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Classic Galactosemia (GALT)
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Cystic Fibrosis (CF)
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Spinal Muscular Atrophy (SMA)
Search Educational Resources
Looking for resources? Check out our Newborn Screening Education and Training Resource Center.
About Newborn Screening in Oregon
Program Overview:
Oregon newborn bloodspot screening detects babies at increased risk for over 40 different disorders which may lead to irreversible disability or death, without early intervention and treatment. These are diseases which can often be missed or detected too late by your medical provider due to their rare nature.
To complete the first screen, a medical staff member will collect a few drops of blood from your baby’s heel onto a specimen card within 24-48 hours of life. The specimen card is sent to the public health laboratory in Hillsboro, Oregon where the specimen is tested. A second specimen will be collected by your baby’s primary care provider between 10 and 14 days of life and repeat testing occurs for some, but not all, of the disorders on the initial screen.
The Northwest Newborn Bloodspot Screening Program (NWNBS) manages and supports the screening of every infant born in Oregon. The program is comprehensive and covers screening as well as outreach and education to birth hospitals and medical providers on bloodspot collection, follow-up, and referrals. Infants with abnormal screening results are referred to contracted medical consultants across the region who specialize in the diagnosis, care, and treatment of patients with these rare conditions.
By state law, medical providers must collect two bloodspot screening specimens for every baby born in the state. Birthing providers collect the first screen and may give parents the second specimen card for the second screen. If you receive the second specimen card, bring the card to the baby’s first PCP appointment. Please make sure the contact information on the card is accurate so that you can be reached urgently if follow-up is needed. Completing the second screen increases the chances that a condition will be found.
How is Newborn Screening Paid for in Oregon?
The kit to test your newborn includes both the first and second screening cards and costs $175. Kits are purchased by the hospital, birthing center and/or community birth provider.
If a parent has to pay out of pocket for the test kit, but cannot afford it, a fee exemption may be available to cover the cost. Please contact the Northwest Regional Newborn Screening Program for more information.
Policies and Resources
Opt-Out:
All babies born in the state of Oregon must be tested. If a parent objects to the testing based on religious beliefs, they may choose to decline screening by completing a form provided at www.bitly.com/nbs-resource.
Support for families:
After learning that a baby has a condition, families often have questions about the possibility of issues they may encounter such as increased medical costs. Fortunately, Oregon has various laws and programs to support families.
Some infants with a detected condition are at risk for developmental delays and/or educational differences. For infants diagnosed with a condition, parents have the option to access Oregon’s Early Intervention/Early Childhood Special Education (EI/ECSE) Services. This no-cost program provides support for the developmental and educational needs of children ages birth to five and their families.
Additional programs available in Oregon include:
Family Connects Oregon (FCO)
FCO is a free, nurse home visiting program for all families with newborns. The program supports parents by linking nurses, community resources, and families. Its mission is to connect families with resources that nurture the whole family and support the child, planting seeds for the future.
Family Connects Oregon is based on the Family Connects International home visiting model and builds on Oregon’s current home visiting programs, expanding services to all families, regardless of income or background. FCO will be available in select locations across the state, beginning in 2021, and will eventually be available to all Oregon families with newborns over time. The home visiting service is voluntary. However, all families are encouraged to participate.
The program provides between one and three nurse home visits to every family with a newborn beginning at about three weeks of age. Using a tested screening tool, the nurse measures newborn and maternal health and assesses strengths and needs to link the family to community resources.
Research shows that 95 percent of all families have needs after the birth of a child. These needs are unique to each family. The nurse home visitor works with families to identify what families need and want. Family Connects Oregon bridges the gap between parents and community resources, which has been shown to improve family well-being.
More information on this program can be found here: https://www.familyconnectsoregon.org/about.
CaCoon
CaCoon is a statewide public health nurse home visiting program. CaCoon home visitors help families coordinate care for their children and youth including those with special health needs. The program has operated in most Oregon counties for over 20 years. CaCoon serves children age 0-21. The most vulnerable families, such as those with a newly diagnosed infant, are prioritized for services.
When children get health care and services from a number of different sources, it’s important that all the moving parts work well together. Coordinated care and services are more efficient and effective. CaCoon nurses can meet with families in their homes. They partner with families to clarify problems and find solutions. CaCoon nurses offer nursing expertise and share information about local resources. This partnership helps families get the most from the services available to their children.
Families can request CaCoon services. Referrals may also come from health, education, or community service providers. To find out more, call your local public health department and ask for the Maternal and Child Health section. Current local health department phone numbers are available on OCCYSHN’s website (direct link here).
Family to Family Health Information Center
The Oregon Family to Family Health Information Center supports families and caregivers of children with special health needs to navigate the complex health care systems. Staffed entirely by parents of children and youth with a variety of health conditions, we provide free one-to-one support, training, and printed materials to families and the professionals who serve them. This website houses hundreds of resources for parents, grandparents, teens, and young adults. Families can visit the website or call 855-323-6744 (English) or 833-990-9930 (Español).
Babies First!
Babies First! is a free public health nurse home visiting program for pregnant people and children ages 0 through 4 years and their caregivers who would benefit from extra support to achieve the best health outcomes for themselves and their baby.
Nurses visit you and your baby at home and can help answer questions about how to keep your baby healthy, weigh your baby, support breastfeeding, give information about what to expect as your child grows and develops, help keep your home safe, keep your child’s teeth and smile healthy and more. More information can be found here: https://www.oregon.gov/oha/PH//HealthyPeopleFamilies/Babies/HealthScreening/BabiesFirst/Pages/index.aspx.
Families can self-refer or request referral by their primary care provider, the best contact is: [email protected].
For newborns with inborn errors of metabolism requiring dietary treatment such as Phenylketonuria (PKU), Oregon State Law (ORS 743A.188) requires Oregon health insurance policies to provide coverage for treatment in the form of medical foods and metabolic formula (https://oregon.public.law/statutes/ors_743a.188).
Storage and Use of Dried Blood Spots:
Newborn screening specimens are stored by the Oregon State Public Health Laboratory for one year and then securely destroyed. A parent or legal guardian may request the newborn screening specimen be returned. More information and the request form can be found on the newborn screening website for parents.
To see a copy of the blood spot card used in Oregon click here.
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