Media contact: Jonathan Modie, PHD.Communications@oha.oregon.gov
Oregon to begin enrollment in nationwide newborn genomic screening research study
Recruitment to take place at PeaceHealth-Eugene and Oregon Health & Science University, along with statewide outreach
Recruitment in Oregon, one of seven participating states and territories, will take place through in-person outreach at PeaceHealth-Eugene and Oregon Health & Science University (OHSU). In addition, families across the state can learn about the study and choose to self-enroll.
“Partnership with BRIDGES-NBS will allow the Northwest Regional Newborn Bloodspot Screening Program to explore a new method for identifying hundreds of genetic conditions in the newborn period, where early detection, monitoring, and treatment can lead to improved outcomes,” said Patrice Held, Ph.D., Newborn Screening Program manager at the Oregon State Public Health Laboratory.
“Genome sequencing has the promise to transform the field of newborn screening from a small panel of 46 conditions to more than 700 conditions,” Held said.
BRIDGES-NBS is the nation's first coordinated, multi-state genomic newborn screening effort. The study will assess the feasibility of integrating genome sequencing into existing state public health newborn screening programs, exploring how public health, genomic sequencing, and clinical care can work better together for newborns and their families.
Genome sequencing for newborn screening starts with a small blood sample from the baby. The laboratory uses the sample to look for specific genetic changes that may be associated with certain health conditions. The goal is to identify genetic changes that could indicate that a baby may need additional testing or follow-up care.
Participation in BRIDGES-NBS is voluntary, at no cost to families, and requires informed consent from a parent or legal guardian. The study uses the same dried bloodspot (heel prick) sample already collected for routine newborn screening, so no additional sample is needed. BRIDGES-NBS complements, and does not alter or replace, existing newborn screening services.
BRIDGES-NBS will test for about 800 conditions that are actionable in the first year of life, allowing monitoring and treatment to begin before a child's first birthday. GeneDx, the study's integrated laboratory partner, will perform the genome sequencing and interpretation. The project will recruit, obtain consent for, and enroll up to 30,000 newborns during a two-year period across all seven participating programs (Iowa, Minnesota, New York, Oregon, Puerto Rico, South Carolina, and Texas). The study will also evaluate the ethical, legal, and social implications of genetic testing, guided by a community advisory board.
About the NWRNBS Program
The Northwest Regional Newborn Bloodspot Screening (NWRNBS) Program is designed to identify newborns affected by specific medical conditions in time to prevent impairment. The program is embedded in the Oregon State Public Health Laboratory, a section of the Oregon Health Authority’s Public Health Division.
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