January 22, 2020
What: A public meeting of the Northwest Regional Newborn Bloodspot Screening (NWRNBS) Advisory Board.
Agenda: Welcome; recap and review of work; disorder review introduction; spinal muscular atrophy (SMA) review and discussion (open comment period to include SMA); X-linked adrenoleukodystrophy (X-ALD) review and discussion (open comment period to include X-ALD); review draft process for recommending the removal of disorders from the screening panel; wrap-up and next steps.
When: Tuesday, Feb. 4, 8:30 a.m. to 4:30 p.m. Two 10-minute public comment periods are scheduled at about 10 a.m. and 12:45 p.m.; comments are limited to from one to three minutes depending on the number of people providing comments.
Where: Oregon State Public Health Laboratory, Suite 100, Shared Conference Room, 7202 NE Evergreen Parkway, Hillsboro. Please check in at the front desk and bring a photo ID. A conference call line is available by dialing 720-707-2699 (West Coast); 646-558-865 (East Coast), access code 753 960 1319.
Background: The Northwest Regional Newborn Bloodspot Screening Program screens newborns for endocrine, hemoglobin, cystic fibrosis, immunodeficiency and metabolic disorders that may not be clinically evident in the first few days or weeks of life. Detecting these conditions early allows the infant to be referred for diagnosis and appropriate treatment to prevent death or disability. For more information, visit healthoregon.org/nbs.
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Everyone has a right to know about and use Oregon Health Authority (OHA) programs and services. OHA provides free help. Some examples of the free help OHA can provide are:
- Sign language and spoken language interpreters
- Written materials in other languages
- Braille
- Large print
- Audio and other formats
If you need help or have questions, please contact Christianne Biggs at 503-693-4172, 711 TTY or NBS.AdvisoryBoard@dhsoha.state.or.us, at least 48 hours before the meeting.