Abstract
Objective:
To identify necessary components of a successful cystic fibrosis (CF) newborn screening (NBS) program.
Study design:
The approach to CF NBS used by the Massachusetts NBS program was examined.
Results:
Several key components were identified that should be addressed when a state has made the decision to screen, and well in advance of actual implementation. These components include (1) inclusion of CF center directors in the development process; (2) logistics of choosing a screening algorithm relative to practices in place and community wishes; (3) projections of medical service needs from specific algorithms; (4) identification of critical reporting components; (5) identification of critical follow-up components; and (6) recognition of educational needs.
Conclusions:
Careful examination of a wide variety of issues is needed to ensure optimal implementation of NBS for CF.
Publication types
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Research Support, Non-U.S. Gov't
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Research Support, U.S. Gov't, Non-P.H.S.
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Review
MeSH terms
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Aftercare / organization & administration
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Algorithms
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Attitude of Health Personnel
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Attitude to Health
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Cystic Fibrosis / diagnosis*
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Decision Making, Organizational
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Genetic Counseling / organization & administration
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Health Knowledge, Attitudes, Practice
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Humans
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Infant, Newborn
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Massachusetts
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Models, Organizational
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Needs Assessment / organization & administration*
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Neonatal Screening / organization & administration*
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Neonatal Screening / psychology
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Outcome Assessment, Health Care / organization & administration
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Parents / education
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Parents / psychology
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Physician Executives / education
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Physician Executives / organization & administration
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Primary Health Care / organization & administration
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Program Development / methods*
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Program Evaluation / methods
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Sensitivity and Specificity
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Social Support