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A Newborn Screening Education Best Practices Framework: Development and Adoption

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Genetic Alliance, 4301 Connecticut Ave NW, Suite 404, Washington, DC 20008, USA
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California Newborn Screening Program, Area Service Center, Rady Children’s Hospital-San Diego, 3020 Children’s Way MC 5116, San Diego, CA 92123, USA
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RTI International, 3040 E Cornwallis Rd, Research Triangle Park, NC 27709-2194, USA
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Minnesota Department of Health, 601 Robert St. N, St. Paul, MN 55155, USA
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Texas Department of State Health Services, Newborn Screening and Genetics Unit—MC 1918, 1100 West 49th St., Austin, TX 78756, USA
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The College of Education, The University of Iowa, N469 Lindquist Center, Iowa City, IA 52242, USA
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Stead Family Children’s Hospital, University of Iowa, 200 Hawkins Drive, Iowa City, IA 52242, USA
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New York State Department of Health, Wadsworth Center, 120 New Scotland Ave, Room 5020, Albany, NY 12208, USA
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Albert Einstein College of Medicine, Montefiore Medical Center, 1695 Eastchester Road, Room 301, Bronx, NY 10461, USA
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Case Western Reserve University, 10900 Euclid Ave, Cleveland, OH 44106-4976, USA
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Author to whom correspondence should be addressed.
Int. J. Neonatal Screen. 2019, 5(2), 22; https://doi.org/10.3390/ijns5020022
Received: 23 April 2019 / Revised: 13 May 2019 / Accepted: 17 May 2019 / Published: 1 June 2019
Newborn screening is a process-based public health service. Newborn screening staff and families alike are essential to maintaining the timeliness of the screening process. Newborn screening education must be accurate and accessible. Past newborn screening conferences have highlighted gaps in best practice and evidence-based guidance on newborn screening education. Sharing successful strategies across programs mitigates the scarcity of resources by cutting costs and reducing the burden of work. These factors illustrate the need for an education framework to guide newborn screening education efforts. The Newborn Screening Education Best Practices Framework responds to these issues by outlining guidance for newborn screening education approaches. Experts in the fields of newborn screening, genetics, and bioethics as well as previous research on best practice guidelines have contributed to the development of this framework. The framework outlines a process for users to evaluate newborn screening education approaches as best practices. This framework reviews best practices using a two-step approach, looking at guiding questions, implementation of the newborn screening issue, and evaluation. The framework helps the user define the characteristics of the newborn screening issue, intended audience, and practical steps to implementation, and then decide whether or not it can be used as a best practice. View Full-Text
Keywords: newborn screening; best practices; health education; health communication; public health newborn screening; best practices; health education; health communication; public health
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Evans, A.; LeBlanc, K.; Bonhomme, N.; Shone, S.M.; Gaviglio, A.; Freedenberg, D.; Penn, J.; Johnson, C.; Vogel, B.; Dolan, S.M.; Goldenberg, A.J. A Newborn Screening Education Best Practices Framework: Development and Adoption. Int. J. Neonatal Screen. 2019, 5, 22.

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