Improving Timeliness of Newborn Screening Diagnosis

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This announcement solicits applications for the Improving Timeliness of Newborn Screening Diagnosis program.  The purpose of the initiative is to improve the time to diagnosis and treatment for babies undergoing newborn screening (NBS) who receive a presumptive positive result.  This initiative will fund one organization that will facilitate and coordinate collaborative learning and quality improvement (QI) activities by newborn screening programs using strategies that improve newborn screening timeliness.  The overall goal for this initiative is to increase the number of states that meet the Secretary¿s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC or Committee) recommendations on timeliness and the number of infants receiving timely diagnosis and treatment.  The SACHDNC¿s duties include providing advice and recommendations to the Secretary concerning grants and projects awarded under section 1109 of the PHS Act and making systematic evidence-based and peer-reviewed recommendations to the Secretary that include the heritable disorders that have the potential to significantly affect public health, for which all newborns should be screened.  In order to achieve the best outcomes for babies, the Committee  has discussed the following time periods to improve notification of results*: 1)      Presumptive positive results for time-critical conditions should be communicated immediately  to the child¿s healthcare provider but no later than the fifth day of life. 2)      All presumptive positive results for all other conditions should be  communicated to the child¿s healthcare provider as soon as possible but no later than seven (7) days of life. 3)      All NBS results should be reported within seven (7) days of life. *On February 12, 2015, the DACHDNC will finalize these recommendations.  The awardee is expected to use the DACHDNC¿s final recommendations.  Program activites include: ·         Facilitate the implementation of practice-based strategies and coordinate QI projects using strategies that will  improve timeliness of newborn screening, diagnosis, and treatment in at least 20 state newborn screening programs.  The QI process must include state NBS programs and other stakeholders to initiate QI activities in the state(s). ·         Engage public and private partners at the Federal, state, and local levels to drive QI efforts in NBS and to coordinate activities including developing and disseminating educational materials, best practices and lessons learned.   ·         Provide an ongoing forum for technical assistance, education, training, communication, and collaboration between stakeholders to address the needs of state newborn screening programs with respect to timeliness, especially as it may impact health disparities within underserved populations such as rural and tribal communities. ·         Disseminate educational and training resources related to newborn screening processes.  Examples include: published articles, educational materials, standard operation procedures, lessons-learned, presentations, best practices, regional and national evaluation materials and reports, technical assistance training webinars/conference calls, QI activity materials, and data collection tools and reports for measure reporting requirements. ·         Develop a data strategy that includes collecting data on NBS timeliness from participating states and supports the use of real-time data to drive continuous quality improvement.  Participate in collaborative efforts with the Centers for Disease Control and Prevention¿s (CDC) and National Institutes of Health¿s (NIH), and HRSA¿s MCHB funded programs related to newborn screening initiatives.

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