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Newborn Screening Program Updates

Sign Up to Receive Program Updates

To more efficiently communicate with all clients, the Oregon Newborn Bloodspot Screening Program is collecting email addresses for the facilities and providers that submit specimens to our laboratory. This list is intended to share program information and updates, not laboratory results. To sign up, complete our brief online form.

Newborn Bloodspot Screening Program Notices

Screening for X-Linked Adrenoleukodystrophy Starts January 1, 2023

Beginning on January 1, 2023, all specimens, including first and second screens, received for newborn screening at the OSPHL will be tested for X-Linked Adrenoleukodystrophy (X-ALD). Complete details for healthcare providers can be found in the November 29, 2022 Oregon healthcare provider letter. The Northwest Regional Newborn Bloodspot Screening Program Practitioner’s Manual contains information about X-ALD and other disorders on the screening panel.

X-ALD is a genetic disorder with an incidence of approximately 1 in 5,000 live births.  X-ALD occurs when very long chain fatty acids (VLCFA) cannot be broken down.  The build-up of VLCFA damages the nervous system (brain and spinal cord) and adrenal glands which produce hormones.  All three forms of X-ALD will be detected through screening: childhood cerebral, adrenomyeloneuropathy (AMN), and adrenal-insufficiency.  Symptoms may include progressive impairment of cognition, behavior, vision, hearing and motor function. Treatment includes corticosteroid therapy, hematopoietic stem cell transplant and gene therapy. 

The NWRNBS Program will screen for X-ALD using a biochemical test that measures the amount of VLCFAs.  Newborns identified to be at risk for X-ALD will be referred to medical genetics for evaluation and genetic testing.  

X-ALD is inherited in an X-linked manner. In affected males, the infant’s mother is typically a heterozygous carrier. Heterozygous females may develop symptoms later in life. 

Please refer to the ACMG fact sheet for more information about newborn screening for X-ALD. For more information about newborn screening, please refer to Baby’s First Test. If you have any questions regarding this announcement, please Contact Us

Fee Change Effective August 1, 2022

In June 2022, the Oregon Newborn Bloodspot Screening (NBS) Program notified interested parties of a proposed fee increase for program services. The Program received thoughtful comments of both support and concern during the public comment period. The fee change update letter provides complete details and steps taken by the program to support providers.

Screening for Spinal Muscular Atrophy Started June 1, 2022

Beginning with specimens received at the laboratory on June 1, 2022, the Northwest Regional Newborn Bloodspot Screening Program (NWRNBS) added spinal muscular atrophy to its screening panel. The NWRNBS Practitioner's Manual (pdf) was also updated on this date. Additional details can be found in the letter to Oregon healthcare providers and the ACMG SMA fact sheet (pdf).

The NWRNBS is providing prior provider communications for reference:

  • Letter: November 12, 2019 (pdf) - Oregon Administrative Rule Change and Practitioner's Manual Update, effective November 25, 2019
  • Letter: September 19, 2018 (pdf) - Lysosomal Storage Disorders (LSDs) added to the screening panel, implemented October 1, 2018
  • Letter: March 19, 2018 (pdf) - Lysosomal Storage Disorders (LSDs) added to OAR; Changes to timelines to collect and submit specimens; Change fees for newborn screening test kits, Implemented April 1, 2018