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What is new with the Newborn Screening program in Washington?

Below are brief descriptions of projects that the Newborn Screening program in Washington is working on currently.  If the information contained on this page does not answer all of your questions or you would just simply like more information, please use the embedded links or contact us with your specific question.

Caution: Newborn Screening for Cystic Fibrosis Can Miss Cases

Newborn screening to detect cystic fibrosis began in Washington on March 15, 2006. Since that time we have been successful in identifying many infants with cystic fibrosis (CF). To date we are not aware of any infants with CF who have had delayed diagnoses based on normal newborn screening results. However, the sensitivity of CF screening is not perfect – we anticipate from newborn screening programs in other states that there will be a small percentage of babies with CF who will have negative screening results (approximately 3% to 6% false negative rate based on data from Colorado).

For these reasons we are asking for your assistance in identifying these babies early so they can benefit from treatment. Symptoms of undiagnosed CF are non-specific and may include poor growth, frequent bulky stools, rectal prolapse, recurrent cough/wheezing, and recurrent respiratory infections. If you currently care for children who have any of these symptoms please see the reverse for recommended actions.

Also, if you are aware of any children with diagnosed CF who had negative newborn screening results through Washington’s program, please contact us. Children who were born before screening began or who were born out of state may have undetected CF. If you are uncertain of the child’s screening results you can find out by calling us at 206-418-5410, toll free at 1-866-660-9050 or sending us an email: NBS.Prog@doh.wa.gov.

We are grateful for your efforts in making this program a success. If you have questions or comments, please contact John Thompson at 206-418-5531.
 

If you have any concerns that a child has signs or symptoms suggestive of CF, regardless of newborn screening status, we suggest that you order a sweat chloride test (pilocarpine iontophoresis) performed at a Cystic Fibrosis Foundation-accredited clinical laboratory (see below for list). Sweat testing can be reliably performed in children who are older than two weeks of age and weigh more than six pounds. In areas of the state where access to one of the CF Foundation-accredited laboratories is difficult, you may wish to consider ordering a CFTR DNA mutation analysis (minimum of a 23-mutation panel). Please note, however, that a genetic test is not the gold standard test for CF and may miss identifying a true case, particularly in ethnic and racial minorities. If you have questions, please contact our pediatric pulmonologist consultant, Margaret Rosenfeld, at 206-987-5644 or cfnewbornscreening@seattlechildrens.org.

If a patient of yours is found to have cystic fibrosis, please do the following:

• ensure that they are seen at a Cystic Fibrosis Foundation-accredited CF care center within 48 hours of diagnosis
• inform us for our surveillance and tracking purposes (John Thompson: 206-418-5531)