A sweat test centered protocol for the disclosure and diagnosis of cystic fibrosis in a newborn screening program.
We describe the development of a sweat test centered protocol for disclosure and diagnosis of Cystic Fibrosis. Our protocol aims to identify infants early, minimizes the time of uncertainty for the parents, and yet gives them time to begin to come to terms with the possibility of diagnosis. Over a 9-year period 295,247 newborn infants were screened for CF in Wales, of whom 121 infants were diagnosed as having CF. During this period there were four false negatives (3.3%). Parental satisfaction with the process appears very high 6 months after disclosure.
Respiratory/Cystic Fibrosis Unit, Children's Hospital for Wales, Cardiff, Wales, United Kingdom. doullij@cf.ac.uk
I J M
IJ
Doull
S J
SJ
Hall
D M
DM
Bradley
D002985:Clinical Protocols; D003550:Cystic Fibrosis / Q000175:diagnosis*; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening; D011237:Predictive Value of Tests; D012680:Sensitivity and Specificity; D013542:Sweat / Q000737:chemistry*; D014852:Wales / Q000453:epidemiology