Effective Follow-up in Newborn Screening

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The Legislative Authority for the Effective Long Term Follow up in Newborn Screening funding opportunity is the Public Health Service, PHS Act, 42 U.S.C. 300b10, as amended in the Newborn Screening Saves Lives Act of 2008, NBSSLA. This announcement solicits applications for activities authorized under Section 1109 of the NBSSLA, Improved Newborn and Child Screening for Heritable Disorders. Te activities for this initiative focus on the use of electronic health information exchange, HIE, to improve the newborn screening system, with attention to both short and long term follow up, per the guidance offered in the Statement of the Advisory Committee on Heritable Disorders in Newborns and Children, Advisory Committee, on Long term Follow up after diagnosis resulting from newborn screening, located: http://www.hrsa.gov/heritabledisorderscommittee/reports/longtermfollowupafternewborn.htm. Applicants should consider this report when preparing their application. As per the Advisory Committee: 1. Goal of Long Term Follow up: Assure the best possible outcome for individuals with disorders identified through newborn screening 2. Key features of Long Term Follow up: The assurance and provision of 1. quality chronic disease management, 2. condition specific treatment, 3. and age-appropriate preventive care throughout the lifespan of affected individuals with a condition included in newborn screening. 3. Central Components of Long Term Follow up: 1. Care Coordination through a medical home, 2. Evidence-based Treatment, 3. Continuous Quality Improvement and 4. New Knowledge Discovery. Achieving the goal of long-term follow up requires effective and timely communication and information sharing among patients/families, clinicians, laboratorians, public health agencies, researchers, and relevant community support services. It is anticipated that funded grants will implement models that facilitate meaningful electronic HIE for attaining effective long-term follow up of children and youths with conditions identified by newborn screening, including the evaluation of benefits accrued by the individual throughout his or her life.

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