Dear Secretary Sebelius: The Secretary’s Advisory Committee of Heritable Disorders in Newborns and Children

During this meeting, the SACHDNC reviewed and discussed a Committee report, Improving Data Quality and Quality Assurance in Newborn Screening by Including the Bloodspot Screening Collection Device Serial Number on Birth Certificates, which provides information, advice and recommendations to enhance the ability of state newborn dried bloodspot screening (NDBS) programs to improve and verify universality of the screening program for quality assurance purposes using the latest information technology. Quality assurance of the NDBS screening process needs timely comparison (matching) of screening records with birth records in order to assure universal access to early detection, follow-up and treatment of newborns born in the state for the disorders screened. The enclosed report describes examples of how to capture and harmonize relevant data fields and software requirements across state programs and offers a simplified linking mechanism that expedites the matching of birth certificates and NDBS specimens. One method of linking the birth certificate information and the NDBS specimen is to include the NDBS serial number on the birth certificate. In fact, in a recent survey reported to SACHDNC at this meeting, it was found that 11 states have included a field on thei