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?

Hemoglobin Disorders

Lysosomal Storage Disorders

Contacts

NBS Laboratory

Phone: 503-693-4100

Patrice Held, PhD
Northwest Regional Newborn Screening Program
Oregon State Public Health Laboratory
7202 NE Evergreen Pkwy, Suite 100
Hillsboro, OR 97124-6536
Phone: 503-693-4172
Fax: 503-693-5601
http://public.health.oregon.gov/LaboratoryServices/NewbornScreening/Pages/index.aspx

Follow-Up Program

Sara Etienne, BS
Kristi Murphy, BS, MS GC
Newborn Screening Follow-Up Coordinator
Northwest Regional NBS Program
Oregon State Public Health Laboratory
PO Box 275
Portland, OR 97201
Phone: 503-693-4173
Fax: 503-693-5601
[email protected]
[email protected]

Early Hearing Detection and Intervention

Heather Morrow-Almeida, MPH
EHDI Program Coordinator
Office of Family Health
Oregon Department of Human Services
800 NE Oregon Street, Suite 825
Portland, OR 97232
Phone: 888-917-4327
[email protected]

Maternal and Child Health Section

Public Health Division
Oregon Health Authority
800 NE Oregon Street, Suite 825
Portland, OR 97232
Phone: 971-673-0253
Fax: 971-673-0250
[email protected]

CCHD

Oregon Birth Anomalies Surveillance System
Maternal and Child Health Section
Public Health Division
Oregon Health Authority
800 NE Oregon Street, Suite 825
Portland, OR 97232
Phone: 971-673-0252
Fax: 971-673-0240
[email protected]

Search Educational Resources

Looking for resources? Check out our Newborn Screening Education and Training Resource Center.

VIEW RESOURCES

About Newborn Screening in Oregon

Program Overview:

Oregon newborn bloodspot screening detects babies at increased risk for inherited disorders which may lead to irreversible harm or death, if early intervention and treatment are not provided.   These are often diseases which can 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 within 24-48 hours of birth and put it onto a special filter paper. The filter paper is sent to the public health laboratory in Hillsboro, Oregon where a hole is punched in the blood spot to obtain a sample which can be tested for over 40 different disorders. A second specimen will be collected by your baby’s primary care provider between 10 and 15 days of life and the process is repeated for some, but not all, of the disorders on the initial screen.

Oregon’s newborns are served by the Northwest Newborn Bloodspot Screening Program (NWNBS) run by the Oregon Health Authority (OHA) to manage and support screening of every infant born in the state. The program is comprehensive and covers screening as well as the outreach and education to birth hospitals and medical providers on blood spot collection, follow-up and referrals. Infants with abnormal screening results are directed to contracted medical consultants across the region who specialize in the care, diagnosis and treatment of affected infants.

By state law, medical providers must collect two blood spot screening cards for every baby born in the state. Birthing providers collect the first screen and may give parents the filter paper for the second screen. If you receive a filter paper, be sure to take this to your baby’s two week check-up. Please make sure the phone numbers and addresses on the card are correct 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 $80.  Kits are usually purchased by the hospital, birthing center and/or midwife.

If a parent will be charged for the test kit but cannot afford it, they may apply for a fee exemption. Certain eligibility criteria apply. Additional details and the Fee Exemption Form can be found at www.bitly.com/nbs-resource.

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 genetic 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 that aim to assist.

Some infants with a detected condition are at risk for developmental 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 program provides support for the developmental and educational needs of children ages birth to five and their families for free.

Newborn screening results may identify other medical conditions that are not listed. Other medical conditions that are identified during routine newborn screening will be included in a result report as described in 333-024-1080. It is within the discretion of an infant’s health care provider and parents or legal guardians to determine what, if any, medical follow-up is needed in these circumstances.

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 destroyed. Research requests for use of stored dried bloodspot specimens outside of the newborn screening program are subject to approval by the Oregon State Public Health Laboratory through the “OSPHL Use of Human Samples” process, approval by an Institutional Review Board, and must comply with Oregon Genetic Privacy Statutes.

Families may request that the lab destroy their baby’s specimen before the one year storage period by making a request in writing to the Oregon State Public Health Laboratory. Requests to return a specimen to the baby’s family must be submitted in writing through the baby’s medical practitioner.

To see a copy of the blood spot card used in Oregon click here.

Was this Helpful?

Your input helps us improve the site for parents and practitioners. Leave us feedback about this page.

Was this page helpful?

Was this Helpful? - Feedback

Your input helps us improve the site for parents and practitioners. Leave us feedback about this page.

We're sorry to hear that. How can we do to improve it?

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.