Dutch CF Registry 2017 - Demographic data

People in the Dutch CF Registry 

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In 2017, there were 1,578 people in the Dutch CF Registry: 939 adults (people aged 18 years and over) and 639 children (younger than 18 years). Just over half of them were male, and this has been the case for years.

The Dutch CF Registry records the medical and social data of patients with CF. This allows us to monitor the development of the health of subgroups, both for a given year and over a number of years. For example, whether the children thrive enough compared to the healthy population.

We can also compare the CF centres. Ultimately, registration improves the level of care of patients with CF, because the CF centres discuss the results of the annual report (including multi-year overviews) on an annual basis. In addition, the data are also used to perform analyses, for example to determine whether children diagnosed through Newborn screening are healthier than children who are diagnosed with CF with other methods. We also perform analyses for companies and government agencies, for example to prepare a reimbursement file for new CFTR medication.

The number of children in the Registry has remained almost stable in recent years; the number of adults is going up, see Figure 1 below.

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The age distribution in 2017 is shown in Figure 2 below. Each bar stands for an age, the length of the bar indicates how many people were that age in 2017. The orange dotted line indicates the cumulative, accumulated percentage of people: 50% were around the age of 21, which means that about half of patients with CF were under 22 in 2017.

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