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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

Notice of Proposed Rulemaking: Fee Change

The NWRNBS Program is proposing rule changes to change the fees for newborn bloodspot screening kits effective August 1, 2022. The proposed rule change also permits the program to authorize a fee exemption in lieu of a refund or kit replacement. The proposed rule changes edit the fee for:

  • A one-specimen kit from $59 to $100. 
  • Two-specimen kit and three-specimen kits from $80 to $175.
The fee revenue will be used to cover an anticipated budget shortfall and to modernize services in alignment with national and local recommendations. Enhancements will include adding new conditions to the screening panel based on federal recommendations, providing educational outreach to clinicians serving historically underserved communities, broadening translation services in parent education materials, improving follow-up services for increasingly complex medical conditions, and providing courier and shipping services to improve newborn bloodspot screening timeliness.

A public hearing will be held on June 16, 2022 at 10:00am to receive oral testimony. Written comments may be submitted until 5:00pm on June 30, 2022. Complete details and contact information are provided in the documents below. 

Screening for Spinal Muscular Atrophy Begins June 1, 2022.

Beginning with specimens received at the laboratory on June 1, 2022, the Northwest Regional Newborn Bloodspot Screening Program (NWRNBS) will add spinal muscular atrophy to its screening panel. The NWRNBS Practitioner's Manual (pdf) will also be updated on this date. 

Spinal muscular atrophy (SMA) is a genetic disorder with an incidence of approximately 1 in 10,000 live births. SMA is caused by a lack of the spinal motor neuron (SMN) protein, which is essential for muscle development. Individuals affected with SMA have impaired nerve cells in the brain stem and spinal cord leading to difficulty in speaking, walking, breathing, and swallowing. 

The NWRNBS Program will screen for SMA using a molecular test targeting exon 7 in the SMN1 gene which is absent in 95% of all affected individuals. Newborns identified to be at risk for SMA will be referred to pediatric neurologists for immediate evaluation and diagnostic testing. There are currently FDA-approved therapies for SMA, enabling substantial improvements to the quality of life for affected individuals.

Please refer to the ACMG SMA fact sheet (pdf) for more information. Please Contact Us if you have any questions regarding this announcement.

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