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We have previously reported the survival of the UK cystic fibrosis (CF) population.1
Funding for active surveillance ceased in 1997, leaving incomplete ascertainment for the post-1993 cohorts and thus preventing accurate survival calculations for these cohorts. However, as the number of CF births in the UK is reasonably constant, being related to the total birth rate, a knowledge of CF deaths by age can give an insight into the survival of young children.
Death certification data for the UK were obtained for 1994 to end 2003 (ICD-9 codes 2270, 7770, and 7484, and ICD-10 codes E84.0, E84.1, E84.8, and E84.9). Non-nationals and obvious miscodings were removed. Table 1 presents deaths by year of birth and age.
The 1994 data are consistent with a 97% survival to age 10 (304/311) based on live births (750 000) and CF incidence (1 in 2416). Deaths in the first year of life average three (29/10) per cohort, while subsequently there is about one death every three completed years (12/34).
It would be difficult to assert that these figures could be bettered without the most detailed investigation of the circumstances surrounding each death.
Competing interests: none declared