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The Division of Public Health’s mission is to protect and enhance the health of the people of Delaware. The Division accomplishes its mission by: - Working together with others; - Addressing issues that affect the health of Delawareans; - Keeping track of the State’s health; - Promoting positive lifestyles; - Responding to critical health issues and disasters; - Promoting the availability of health services. The accomplishment of this mission will facilitate the Division in realizing its vision of creating an environment in which people in Delaware can reach their full potential for a healthy life. Newborn screening is an essential public health activity focused on testing every newborn for certain congenital conditions which, without early identification and management, can result in significant morbidity and mortality. Screening tests identify newborns having a higher risk of having a condition. Screening is not diagnostic, and newborns identified with presumptive findings require further testing and clinical evaluation to confirm their status as affected or unaffected. Newborn screening for many congenital conditions is routine throughout much of the world and traditionally uses a dried blood specimen (DBS) —blood applied to purpose-manufactured collection paper sent to specialized screening laboratories. Effective newborn screening systems (NSS) provide the infrastructure for universal access and rapid follow-up for affected newborns whose lives and health may be at risk. A complete system for screening comprises seven parts: sample collection and delivery, sample testing, follow-up, diagnosis, intervention and/or management, evaluation, and education. Parents/legal guardians, all health care providers, and the newborn screening program (NSP) involved in the care of the newborn should collaborate to ensure that the NSS functions effectively to provide maximum benefit. Delaware’s newborn screening program began in 1963 with screening for a single condition, Phenylketonuria, and has grown to screen for more than 40 conditions. Every infant born in the state is required to have a screen completed between 24 and 48 hours of life. Currently, birth facilities mail blood spot screens via UPS to the contracted laboratory for testing. Delaware’s existing code for the Newborn Screening Program can be found here, Delaware Code Online. The composition of the Newborn Screening test panel is decided by the Division of Public Health Director in consultation from the Newborn Screening Advisory Board that meets several times a year. The national recommendations for disorders to be included on the Recommended Uniform Screening Panel (RUSP) are considered, but not necessarily added. The present Delaware disorder and test list includes mirrors the current RUSP list, https://www.hrsa.gov/advisory-committees/heritable-disorders/rusp/index.html. Delaware receives over 11,000 initial samples from birthing facilities and midwives each year. Each specimen is screened for all disorders per the list in the link above. In addition to metabolic screening of babies born or admitted to Delaware birth facilities, ‘Diet’ screening is performed for all affected individuals identified with an aminoacidopathy for the life of that individual. Over 30 individuals are monitored for PKU and Hyperphenylalanemia and Tyrosinemia. Currently, samples are mailed to the contracted DPH Laboratory six days a week: Monday through Saturday (excluding courier holidays). The current application/database system captures all screening-related information and activities. Samples are accessioned upon receipt, batches are defined, tests are performed, test results are reviewed and released, and result reports can be printed. This includes quality reports submitted to NewSTEPs. Delaware has also developed the capability to allow medical providers to have access to patient results Follow-up activities can be divided into two broad categories: short-term follow-up (STFU) and long-term follow-up (LTFU). Within newborn screening, simply reporting “screen positive,” “out-of-range,” or “invalid” results does not ensure appropriate or timely treatment for affected newborns. Rapid, efficient, and effective STFU is critical to ensure that newborns needing further testing are evaluated quickly, and receive the testing indicated and prompt and appropriate referral for subspecialty care and support services. Active STFU responsibility ends when the infant is proven either not to be affected or has been verified to be under appropriate care, including treatment. The primary aim of newborn screening is to provide intervention to affected babies. LTFU is the means by which accountability of Newborn Screening Systems and Programs can be ensured. It determines if they are sustaining their primary aims of preventing mortality and mitigating morbidity. Such follow-up is vital to the evaluation of newborn screening benefits throughout the life of an individual, as well as to the family and society. NSPs may not be directly involved in long-term outcome assessment, but if they do not play a central coordinating role, then they need to facilitate LTFU and be aware of the results. Long-term follow-up is not addressed by this Request for Proposal. Delaware’s Newborn Screening Program follow up activities include: - ensuring correct demographic information on infant - locating infant and primary care provider - sending letters and results to appropriate parties at specific times after abnormal results are obtained - ensuring that any requested repeat screening has been communicated to appropriate provider and/or parent and that the repeat is - received and processed in a timely manner - sending letters to parents and providers on infants that have not had the required second screening - conducting case review of all open cases with medical consultants -conducting a weekly match of all newborn screens received against the vital records report to ensure that every newborn has been screened - conducting monthly matches against the infant mortality report to ensure accuracy of newborn screening records - participation at all Newborn Screening Advisory Committee meetings - coordination of and participation in newborn screening educational activities - coordination and completion of regular quality improvement and quality assurance activities