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Infrastructure and Educational Needs of Newborn Screening Short-Term Follow-Up Programs within the Southeast Regional Newborn Screening & Genetics Collaborative: A Pilot Survey

1
Emory University School of Medicine, Atlanta, GA 30322, USA
2
Tulane University, New Orleans, LA 70118, USA
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Author to whom correspondence should be addressed.
Academic Editor: Sampath Parthasarathy
Healthcare 2015, 3(4), 964-972; https://doi.org/10.3390/healthcare3040964
Received: 8 September 2015 / Revised: 29 September 2015 / Accepted: 9 October 2015 / Published: 15 October 2015
(This article belongs to the Special Issue Implementation of Public Health Genomics)
Newborn screening (NBS) follow-up protocols vary significantly by state, and there is a need to better understand the infrastructure and communication flow of NBS programs. In addition, assessment of the educational needs of families and providers with regard to the implications of NBS results is required to inform the development of appropriate informational resources and training opportunities. To begin to address these issues, we administered a web-based survey to state NBS coordinators within the Southeast Regional Newborn Screening & Genetics Collaborative (SERC). Fourteen coordinators responded to the survey, including at least one from each of the 10 SERC states/territories. Over one-third of respondents had never received formal training regarding the metabolic conditions identified on NBS. Most communicated results via telephone or fax, though two centers indicated use of a web-based platform. Only two programs were involved in directly reporting results to the family. Four programs reported a long-term follow-up protocol. Deficits were noted for primary care provider (PCP) knowledge of metabolic disorders identified on NBS, and how to inform parents of abnormal results. Close to half indicated that the adequacy of the number of genetic counselors, dietitians, and medical/biochemical geneticists was minimal to insufficient. Respondents uniformly recognized the importance of providing additional educational and informational resources in multiple categories to NBS staff, PCPs, and families. View Full-Text
Keywords: newborn screening; short-term follow-up; long-term follow-up; protocols; education newborn screening; short-term follow-up; long-term follow-up; protocols; education
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Bellcross, C.A.; Harmond, L.; Floyd-Browning, P.; Singh, R. Infrastructure and Educational Needs of Newborn Screening Short-Term Follow-Up Programs within the Southeast Regional Newborn Screening & Genetics Collaborative: A Pilot Survey. Healthcare 2015, 3, 964-972.

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