These figures were taken from the Cystic Fibrosis Foundation’s (CFF) 2017 Patient Registry Annual Data Report.
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- The mortality rate in 2017 was 1.3 deaths per 100 individuals with CF in the Registry. There has been a steady decrease in the mortality rate over the last 30 years. This is encouraging, given that the median age of individuals in the Registry has increased from 11.7 years in 1987 to 19.3 years in 2017.
- Over the last ten years, there has been almost a doubling of the number of people with CF who are married or living together and the number of people with a college degree.
- The number of pregnancies among women with CF has increased steadily since the 1990s. Registry data show that 273 women with CF were pregnant in 2017. The overall pregnancy rate among women with CF has remained relatively constant since the 1990s while it decreased in the general U.S. population.
- Encouragingly, 86.3 percent of infants diagnosed with CF have had their first clinic encounter, genotyping, or sweat test within 30 days of birth.
- Successive birth cohorts show improved lung function for all individuals who are old enough to perform reliable lung function testing. The majority of those age 18 now have an FEV percent predicted greater than or equal to 70. FEV percent predicted is steadily improving and currently is above 90 percent predicted into early adolescence.
- The proportion of people with CF, age 18 who are in the normal/mild lung disease category (FEV1 ≥70 percent predicted) has increased from 34.6 percent in 1987 to 76.0 percent in 2017. The proportion in the severe lung disease category (FEV1 <40 percent predicted) has decreased from 31.7 percent in 1987 to 4.0 percent in 2017.
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