Expanded newborn screening in Puerto Rico and the US Virgin Islands: Education and barriers assessment

Ana Morales, Andrea Wierenga, Carla Cuthbert, Stephanie Cohn Sacharow, Parul Jayakar, Darcy Velazquez, Jessica Loring, Deborah Barbouth

Research output: Contribution to journalArticle

7 Scopus citations

Abstract

Purpose: The implementation of the expanded newborn screening panel of 29 disorders recommended by the American College of Medical Genetics in Puerto Rico and United States Virgin Islands is still in development or in early stages Efforts in the territories are complicated by educational and resource barriers that generate a wide gap between the islands and the US mainland Methods: To meet immediate educational needs, we conducted in-services for local newborn screening professionals The efficacy of the educational intervention was measured by pre and posttest scores and a seminar evaluation An assessment was obtained to document local newborn screening needs and barriers, with focus on human resources, intervention, language, social issues, education, and communication Results: Statistical significance was found (P value≤0 05) between pre and posttest scores of the educational intervention Needs and barriers associated with expanded newborn screening were also documented Conclusion: Puerto Rico and United States Virgin Islands face different challenges in their implementation of expanded newborn screening The data obtained in the present study serves as foundation for the development of public policy and long-term educational programs.

Original languageEnglish (US)
Pages (from-to)169-175
Number of pages7
JournalGenetics in Medicine
Volume11
Issue number3
DOIs
StatePublished - Mar 1 2009

Keywords

  • Education
  • Expanded newborn screening
  • Social issues

ASJC Scopus subject areas

  • Genetics(clinical)

Fingerprint Dive into the research topics of 'Expanded newborn screening in Puerto Rico and the US Virgin Islands: Education and barriers assessment'. Together they form a unique fingerprint.

  • Cite this

    Morales, A., Wierenga, A., Cuthbert, C., Sacharow, S. C., Jayakar, P., Velazquez, D., Loring, J., & Barbouth, D. (2009). Expanded newborn screening in Puerto Rico and the US Virgin Islands: Education and barriers assessment. Genetics in Medicine, 11(3), 169-175. https://doi.org/10.1097/GIM.0b013e318193076f