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dc.contributor.authorBadawi, D.
dc.contributor.authorBisordi, K.
dc.contributor.authorSorongon, S.
dc.contributor.authorStrovel, E.
dc.date.accessioned2019-09-27T19:29:59Z
dc.date.available2019-09-27T19:29:59Z
dc.date.issued2019
dc.identifier.urihttps://www.scopus.com/inward/record.uri?eid=2-s2.0-85072370347&doi=10.3390%2fijns5030025&partnerID=40&md5=2e60cd0c8b19ef29e1c33c9906a4f4c7
dc.identifier.urihttp://hdl.handle.net/10713/11029
dc.description.abstractThis 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.en_US
dc.description.sponsorshipThis 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.en_US
dc.description.urihttps://doi.org/10.3390/ijns5030025en_US
dc.language.isoen-USen_US
dc.publisherMDPI Multidisciplinary Digital Publishing Instituteen_US
dc.relation.ispartofInternational Journal of Neonatal Screening
dc.subjectGeneticsen_US
dc.subjectLong-term follow-upen_US
dc.subjectNewborn screeningen_US
dc.titleNewborn screening long term follow-up in the medical homeen_US
dc.typeArticleen_US
dc.identifier.doi10.3390/ijns5030025


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