Challenges in implementing a successful newborn cystic fibrosis screening program.
OBJECTIVE
To identify necessary components of a successful cystic fibrosis (CF) newborn screening (NBS) program.


METHODS
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.
Comeau
Anne Marie
AM
New England Newborn Screening Program of the University of Massachusetts Medical School, MA 02130, USA. anne.comeau@umassmed.edu
Parad
Richard
R
Gerstle
Robert
R
O'Sullivan
Brian P
BP
Dorkin
Henry L
HL
Dovey
Mark
M
Haver
Kenan
K
Martin
Tom
T
Eaton
Roger B
RB
D000359:Aftercare / Q000458:organization & administration; D000465:Algorithms; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003550:Cystic Fibrosis / Q000175:diagnosis*; D003659:Decision Making, Organizational; D005817:Genetic Counseling / Q000458:organization & administration; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007231:Infant, Newborn; D008404:Massachusetts; D017146:Models, Organizational; D020380:Needs Assessment / Q000458:organization & administration*; D015997:Neonatal Screening / Q000458:organization & administration* / Q000523:psychology; D017063:Outcome Assessment, Health Care / Q000458:organization & administration; D010290:Parents / Q000193:education / Q000523:psychology; D008486:Physician Executives / Q000193:education / Q000458:organization & administration; D011320:Primary Health Care / Q000458:organization & administration; D016730:Program Development / Q000379:methods*; D015397:Program Evaluation / Q000379:methods; D012680:Sensitivity and Specificity; D012944:Social Support