Parent Notification: Timeliness of Notification by Health Care Providers

When screening results indicate an infant requires diagnostic testing and evaluation, the Newborn Screening Program contacts the infant's health care provider with disorder specific recommendations. The infant's provider is then responsible for informing the parents.

Health care providers are required to notify the Newborn Screening Program of the date they communicated the need for diagnostic testing to the parent or guardian (70.83.070 RCW). During 2017, 57.2% of the required notifications were received by the department. Of the reported notifications, 77.7% were considered on-time.

Referrals from the Newborn Screening Program to the infant's healthcare provider for diagnostic testing are classified into two types:

1. Standard Referrals

Due to the potential severity of the condition, clinical evaluation and diagnostic testing should be done immediately. Parents should be notified the same day as the referral.

For standard referrals, 51.1% of the required notifications were reported to the department. Of the reported notifications, 68.1% reported that parents were notified the same day as the referral.

2. Non-urgent Referrals

Diagnostic testing and evaluation should be done as soon as possible.

For non-urgent referrals, 61.3% of the required notifications were reported to the department. Of the reported notifications, 83.1% reported that parents were notified within three days of the referral.

Timeliness of Parent Notification by Health Care Providers (PDF)

Timeliness of Parent Notification by Health Care Providers
Births January 1, 2017 - December 31, 2017
Newborn Screening Referral Category	Infants Referred for Diagnostic Testing		Health Care Provider Reported Date of Parent Notification		On-time Parent Notification
Newborn Screening Referral Category	Total	Percent	Total	Percent	Total	Percent
Standard Referral	141	39.9%	72	51.1%	49	68.1%
Non-urgent Referral	212	60.1%	130	61.3%	108	83.1%
All Referrals	353*	100%	202	57.2%	157	77.7%

*Excludes 27 instances where the healthcare provider began diagnostic testing prior to screening results based on family history, prenatal diagnosis, or clinical symptoms.

Timeliness of Parent Notification by Referral Category

Disorders included in Standard Referrals: Congenital adrenal hyperplasia (CAH), Congenital hypothyroidism (CH), Cystic Fibrosis (CF), Glutaric acidemia type I (GA-I), Galactosemia (GALT), Isovaleric acidemia (IVA), Maple syrup urine disease (MSUD), Medium chain acyl-CoA dehydrogenase (MCAD) deficiency, Methylmalonic acidemias (MMA)/Propionic acidemia, Phenylketonuria (PKU), Severe combined immunodeficiency (SCID), and Very long-chain acyl-CoA dehydrogenase (VLCAD) deficiency.

Disorders included in Non-urgent Referrals: Congenital adrenal hyperplasia (CAH), Cystic fibrosis (CF), Mild congenital hypothyroidism (CH), Carnitine uptake defect (CUD), Homocystinuria (HCY), Hemoglobinopathies (HB), 3-hydroxy-3-methyglutaric aciduria (HMG)/ Multiple carboxylase deficiency (MCD), Isovaleric acidemia (IVA), Methylmalonic acidemias (MMA)/Propionic acidemia, and Severe combined immunodeficiency (SCID).

If you have questions regarding the compliance and quality standards for Newborn Screening, please contact us at 206-418-5410 or email at NBS.Prog@doh.wa.gov.