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    Newborn screening long term follow-up in the medical home

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    Author
    Badawi, D.
    Bisordi, K.
    Sorongon, S.
    Strovel, E.
    Date
    2019
    Journal
    International Journal of Neonatal Screening
    Publisher
    MDPI Multidisciplinary Digital Publishing Institute
    Type
    Article
    
    Metadata
    Show full item record
    See at
    https://doi.org/10.3390/ijns5030025
    Abstract
    This demonstration project explored the feasibility of utilizing data from pediatric primary care providers to evaluate the long-term outcomes of children with disorders identified by newborn screening (NBS). Compliance with national guidelines for care and the morbidity for this population was also examined. Primary care practices were recruited and patients with sickle cell disease or who were deaf/hard of hearing were given the opportunity to enroll in the study. Data were collected on the quality of the medical home with practice data compared to family responses. Clinical outcomes for each patient were assessed by review of medical records and patient surveys. These data sources were compared to determine accuracy of primary care data, morbidity, and receipt of preventive care. Electronic data sharing was explored through transmission of Clinical Document Architecture (CDA) files. Care coordination was a challenge, even in highly accredited medical homes. Providers did not have complete information regarding clinical outcomes and children were not consistently receiving recommended preventive care. Electronic data sharing with public health departments encountered interface challenges. Primary care providers in the USA should not currently be used as a sole source to evaluate long-term outcomes of children with disorders identified by NBS. Copyright 2019 by the authors.
    Sponsors
    This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number HRSA-13-213, Integrating Newborn Screening Long-term Follow-up into Primary Care Practices.
    Keyword
    Genetics
    Long-term follow-up
    Newborn screening
    Identifier to cite or link to this item
    https://www.scopus.com/inward/record.uri?eid=2-s2.0-85072370347&doi=10.3390%2fijns5030025&partnerID=40&md5=2e60cd0c8b19ef29e1c33c9906a4f4c7; http://hdl.handle.net/10713/11029
    ae974a485f413a2113503eed53cd6c53
    10.3390/ijns5030025
    Scopus Count
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    UMB Open Access Articles 2019

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