Newborn screening: a national snapshot with implications for emergency preparedness

To conduct a nationwide survey of the methods used in newborn screening (NBS) programs to notify birthing centers, pediatricians, and parents of the results of NBS tests in every state and territory.

State and territory NBS program representatives were identified and contacted via e-mail. Each state or territory responded to a survey asking questions about their methods (eg, telephone, e-mail, surface mail) for reporting normal, borderline, and abnormal results.

With 100% of states and territories responding, a broad array of reporting methods were identified with substantial variability between states for delivering NBS test results to the responsible entities. Mail, telephone, and facsimile were the predominant reporting methods. The majority of states and territories did not have Web-based reporting methods.

State-to-state variability complicates NBS laboratory backup in the event of catastrophic failure and makes emergency preparedness difficult. The most common reporting methods (surface mail, telephone) do not account for likely interruption of infrastructure and the urgent need for abnormal result reporting for patients evacuating their community. Harmonization between states in their reporting methods via Web-based methods should be developed.