{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T11:14:59Z","timestamp":1788261299548,"version":"build-2803163510"},"reference-count":10,"publisher":"MDPI AG","issue":"3","license":[{"start":{"date-parts":[[2019,7,25]],"date-time":"2019-07-25T00:00:00Z","timestamp":1564012800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000102","name":"Health Resources and Services Administration","doi-asserted-by":"publisher","award":["HRSA-13-213"],"award-info":[{"award-number":["HRSA-13-213"]}],"id":[{"id":"10.13039\/100000102","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJNS"],"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.3390\/ijns5030025","type":"journal-article","created":{"date-parts":[[2019,7,25]],"date-time":"2019-07-25T05:37:41Z","timestamp":1564033061000},"page":"25","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Newborn Screening Long Term Follow-Up in the Medical Home"],"prefix":"10.3390","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7820-0182","authenticated-orcid":false,"given":"Deborah","family":"Badawi","sequence":"first","affiliation":[{"name":"Maryland Department of Health, Baltimore, MD 21201, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katharine","family":"Bisordi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Human Genetics, University of Maryland School of Medicine, Baltimore, MD 21201, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marilyn J.","family":"Timmel","sequence":"additional","affiliation":[{"name":"Maryland Department of Health, Baltimore, MD 21201, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Scott","family":"Sorongon","sequence":"additional","affiliation":[{"name":"University of Maryland School of Medicine Clinical and Translational Research Informatics Center, Baltimore, MD 21201, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin","family":"Strovel","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Human Genetics, University of Maryland School of Medicine, Baltimore, MD 21201, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2019,7,25]]},"reference":[{"key":"ref_1","unstructured":"(2013, January 03). Institute for Healthcare Improvement Triple Aim Initiative. (n.d.). IHI Triple Aim Initiative. Retrieved January 3, 2013, from Institute for Healthcare Improvement. Available online: http:\/\/www.ihi.org\/offerings\/Initiatives\/TripleAim\/Pages\/default.aspx."},{"key":"ref_2","unstructured":"McCarthy, D., Klein, S., and Issues Research, Inc. (2013, January 30). The Triple Aim Journey: Improving Population Health and Patients\u2019 Experience of Care, While Reducing Costs. The Commonwealth Fund Case Study Series Introduction and Overview, July 2010. Retrieved January 30, 2013, from. Available online: http:\/\/www.commonwealthfund.org\/~\/media\/Files\/Publications\/Case%20Study\/2010\/Jul\/Triple%20Aim%20v2\/14 21_McCarthy_triple_aim_overview_v2.pdf."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"861","DOI":"10.1097\/GIM.0b013e3182209f09","article-title":"What questions should newborn screening long-term follow-up be able to answer? A statement of the US Secretary of Halth and Human Services Advisory Committee on Heritable Disorders in Newborns and Children","volume":"13","author":"Hinton","year":"2011","journal-title":"Genet. Med."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"174","DOI":"10.1038\/gim.2012.122","article-title":"and Medical Home Workgroup for the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives. An approach to family-centered coordinated co-management for individuals with conditions identified through newborn screening","volume":"15","author":"Cooley","year":"2013","journal-title":"Genet. Med."},{"key":"ref_5","unstructured":"(2013, January 30). The Medical Home Index and the Medical Home Family Index. Available online: https:\/\/medicalhomeinfo.aap.org\/tools-resources\/Documents\/CMHI-MHI-Pediatric_Full-Version.pdf."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1367\/1539-4409(2003)003<0173:TMHIDA>2.0.CO;2","article-title":"The Medical Home Index: Development and validation of a new practice-level measure of implementation of the medical home model","volume":"3","author":"Cooley","year":"2003","journal-title":"Ambul. Pediatr."},{"key":"ref_7","unstructured":"(2013, January 03). Longitudinal Pediatric Data Resource of the Newborn Screening Translational Research Network. Personal Communication with Project Manager. Available online: https:\/\/www.nbstrn.org\/research-tools\/longitudinal-pediatric-data-resource."},{"key":"ref_8","unstructured":"The National Heart, Lung and Blood Institute (2019, July 16). Evidence-Based Management of Sickle Cell Disease. Expert Panel Report, 2014. Health Resources and Services Administration, National Institutes of Health, Available online: https:\/\/www.nhlbi.nih.gov\/health-pro\/guidelines\/sickle-cell-disease-guidelines\/."},{"key":"ref_9","unstructured":"Joint Committee on Infant Hearing (2017, December 21). Year 2007 Position Statement. Principles and Guidelines for Early Hearing Detection and Intervention Programs. Available online: www.jcih.org."},{"key":"ref_10","unstructured":"Winston-Gerson, R., and Hoffman, J. (2017, December 21). Tracking, Reporting and Follow Up. Chapter 3 of the NCHAM EHDI E-Book: A Resource Guide for Early Hearing Detection and Intervention. Available online: http:\/\/www.infanthearing.org\/ehdi-ebook\/index.html."}],"container-title":["International Journal of Neonatal Screening"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2409-515X\/5\/3\/25\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T13:09:20Z","timestamp":1760188160000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2409-515X\/5\/3\/25"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,7,25]]},"references-count":10,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2019,9]]}},"alternative-id":["ijns5030025"],"URL":"https:\/\/doi.org\/10.3390\/ijns5030025","relation":{},"ISSN":["2409-515X"],"issn-type":[{"value":"2409-515X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,7,25]]}}}