Infantile Krabbe Disease Added to the NBS Panel
The Northwest Regional Newborn Bloodspot Screening Advisory Board approved the addition of Infantile Krabbe Disease (IKD) to the Oregon panel. The NWRNBS Program will implement screening for IKD on Saturday, November 1, 2025.
Please review the following documents for more information about the disorder:
Changes to Program Rules
The Oregon Health Authority (Authority), Public Health Division, Oregon State Public Health Laboratory's (OSPHL) Northwest Regional Newborn Bloodspot Screening Program (NWRNBS Program) is proposing to amend existing rules for newborn bloodspot screening to align with recent changes in statute (2025 Oregon Laws, Chapter 203 (HB 2741)) and adjust rules to align with practice guidelines. In this proposed rulemaking, the NWRNBS Program proposes:
- Amendments to OAR 333-024-1000 and OAR 333-024-1050 to add in the ability of parents or legal guardians to opt out of screening because of their religious or philosophical beliefs. This aligns the rule with new statutory changes. 2025 Oregon Laws, Chapter 203 (HB 2741).
- Amendments to OAR 333-024-1000 and OAR 333-024-1050 to incorporate more inclusive language with the addition of legal guardians or parents. This aligns the rule with new statutory changes. 2025 Oregon Laws, Chapter 203 (HB 2741).
- Updates to OAR 333-024-1040 requiring a blood card be submitted for all babies born in Oregon. If no blood is collected on the card, because parents or legal guardians opt out of screening (refusal), the baby is transferred to another care facility prior to 24 hours of life, or the baby is deceased, the persons responsible for collecting specimens (OAR 333-024-1020 to 333-024-1025) must still complete the demographic information on the card and send it to the Oregon State Public Health Laboratory. An opt out for religious or philosophical beliefs requires the parent or legal guardian to also complete the Objection to Newborn Screening Blood Test form.
- Methods of testing for each listed disorder is being removed to allow the laboratory to update methods as needed to ensure accuracy of results and alignment with best practices (OAR 333-024-1070).
- Updates to OAR 333-024-1080 adding consistency by including legal before guardian.
You are invited to review and comment on the proposed rules. There are two (2) options to provide comment:
- You may provide oral (spoken) testimony during a public hearing scheduled on Tuesday, December 16, 2025, at 1:30 P.M. Pacific Time via video/phone conference using Microsoft Teams.
- To provide oral testimony during this hearing:
- Join using the Meeting URL. You can also find the join link for the meeting in the Notice of Proposed Rulemaking under “Remote Meeting Details" using the “Meeting URL."
- You may also contact the Public Health Division Rules Coordinator at publichealth.rules@odhsoha.oregon.gov to sign-up to give oral testimony and receive the link for the Microsoft Teams video conference via calendar appointment.
- To join the hearing via phone (audio/listen only), you may dial 971-277-2343, phone conference ID 198 292 183#
2) Written comments may be submitted before 5:00 P.M. Pacific Time on December 22, 2025:
- Email comments to: publichealth.rules@odhsoha.oregon.gov
- Mail comments* to: OHA - Public Health Division
Brittany Hall, Administrative Rules Coordinator
800 NE Oregon St. Suite 930
Portland, OR 97232
*Comments sent by regular mail must be postmarked by 5:00 P.M. Pacific Time on December 22, 2025.
- Send comments by fax to 971-673-1299
Final rules will be filed after consideration of all comments.
If you have questions or would like a paper copy of the Notice of Proposed Rulemaking, please contact Patrice Held at 503-693-4172 or publichealth.rules@odhsoha.oregon.gov.
Accessibility Statement: For individuals with disabilities or individuals who speak a language other than English, OHA can provide free help. Some examples are: sign language and spoken language interpreters, real-time captioning, braille, large print, audio, and written materials in other languages. If you need help with these services, please contact the Public Health Administrative Rules Coordinator at 971-673-1222, 711 TTY or publichealth.rules@odhsoha.oregon.gov at least 48 hours before the meeting. All relay calls are accepted. To best ensure our ability to provide a modification please contact us if you are considering attending the meeting and require a modification. The earlier you make a request the more likely we can meet the need.
Please review the documents below for more information:
Newborn Bloodspot Screening Program Notices
On November 1st, 2025, the existing Oregon Administrative Rules will be amended by the Oregon Health Authority (OHA), Public Health Division, Oregon State Public Health Laboratory, Northwest Regional Newborn Bloodspot Screening Program (NWRNBS Program) to add a new condition for testing, provide clarity to the current rules, and update practice guidelines. The following changes will be made:
- Minor changes made to OAR 333-024-1010 to better clarify the definition of higher-tier testing, a kit, and a specimen.
- Minor change made to OAR 333-024-1030 to better clarify the timing of third collection in premature babies.
- Updates to the screening panel (OAR 333-024-1070) to include one new condition: Infantile Krabbe Disease.
- Updates to OAR 333-024-1090 to remove educational activities as a reason for the use of residual specimens. There is no specific educational activity performed in which residual specimens are needed.
Please review the documents below for more information:
PH_22-2025TrackedChanges.pdf
Annual Reports
The annual report summaries activities within the Northwest Regional Newborn Bloodspot Screening Program and provides data on key performance metrics.
Laboratory Data Systems Replacement Project
Oregon State Public Health Laboratory (OSPHL) operates using multiple legacy laboratory information management systems (LIMS). To improve laboratory work flows and services for clients, OSPHL has undertaken the large project to identify and implement the best possible LIMS available for our lab. At this time, we anticipate system implementation will occur sometime in 2025. For more information about the project and how it may affect your work with us, please visit our
OSPHL Data Improvement Projects website.
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.
Previous Provider Communications
New Newborn Bloodspot Screening Cards Coming in 2025!
The Northwest Regional Newborn Bloodspot Screening Program plans to roll out an updated specimen collection card in early 2025. The updated card has been redesigned to be more user friendly and improve data collection.
Please review the following documents for more information about the new card design:
Updated Primary Congenital Hypothyroidism Screening Algorithm- Effective January 6, 2025