TY - JOUR
T1 - Expanded newborn screening in Puerto Rico and the US Virgin Islands
T2 - Education and barriers assessment
AU - Morales, Ana
AU - Wierenga, Andrea
AU - Cuthbert, Carla
AU - Sacharow, Stephanie Cohn
AU - Jayakar, Parul
AU - Velazquez, Darcy
AU - Loring, Jessica
AU - Barbouth, Deborah
PY - 2009/3/1
Y1 - 2009/3/1
N2 - 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.
AB - 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.
KW - Education
KW - Expanded newborn screening
KW - Social issues
UR - http://www.scopus.com/inward/record.url?scp=63449130300&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=63449130300&partnerID=8YFLogxK
U2 - 10.1097/GIM.0b013e318193076f
DO - 10.1097/GIM.0b013e318193076f
M3 - Article
C2 - 19367190
AN - SCOPUS:63449130300
VL - 11
SP - 169
EP - 175
JO - Genetics in Medicine
JF - Genetics in Medicine
SN - 1098-3600
IS - 3
ER -