At a Glance
2015 Priority List
Support appropriate newborn screening and follow-up
The system shall incorporate clinical decision support to assure newborn screening has been accomplished and that results have been followed up.
Newborn screening deals with rare conditions that may be encountered only once in a lifetime of primary care practice hence primary care physicians need decision support and guidance to complete the workup and initiate appropriate treatment and referrals. The best source of guidance are the American College of Medical Genetics (ACMG ACT Sheets that are also available from AAP and AAFP with clear step-by-step instructions on immediate tasks and actions as well as clear algorithms for evaluation. These are distributed as downloadable PDF documents and they are not computable decision support that must be implemented by EHR vendors. The documents are often distributed by the State newborn screening laboratory with the results of the newborn screening and they may have local modifications with local contact information or information about conditions that are not on the Federal RUSP. It is important for EHR users and vendors to remember that newborn screening is a screening process and a diagnosis is not confirmed until all of the steps on the ACT sheet are completed along with any additional requests from the State newborn screening program.