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Open AccessArticle

Newborn Screening Long Term Follow-Up in the Medical Home

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Maryland Department of Health, Baltimore, MD 21201, USA
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Department of Pediatrics, Division of Human Genetics, University of Maryland School of Medicine, Baltimore, MD 21201, USA
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University of Maryland School of Medicine Clinical and Translational Research Informatics Center, Baltimore, MD 21201, USA
*
Author to whom correspondence should be addressed.
Current Address: Department of Pediatrics, Division of Developmental-Behavioral Pediatrics, University of Maryland School of Medicine, Baltimore, MD 21201, USA.
Current Address: Johns Hopkins University Bloomberg School of Public Health in the Department of Epidemiology, Baltimore, MD 21205, USA.
Int. J. Neonatal Screen. 2019, 5(3), 25; https://doi.org/10.3390/ijns5030025
Received: 8 June 2019 / Revised: 8 July 2019 / Accepted: 8 July 2019 / Published: 25 July 2019
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. View Full-Text
Keywords: newborn screening; genetics; long-term follow-up newborn screening; genetics; long-term follow-up
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MDPI and ACS Style

Badawi, D.; Bisordi, K.; Timmel, M.J.; Sorongon, S.; Strovel, E. Newborn Screening Long Term Follow-Up in the Medical Home. Int. J. Neonatal Screen. 2019, 5, 25.

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