Comparative analysis of Cystic Fibrosis Registry data from the UK with USA, France and Australasia.
Comparative analysis of Cystic Fibrosis Registry data from the UK with USA, France and Australasia.
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DOI：
10.1016/j.jcf.2005.01.001
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发表时间：
2005-05-01
期刊：
影响因子：
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通讯作者：
Mehta, Anil
中科院分区：
文献类型：
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作者：
McCormick, Jonathan;Sims, Erika J;Mehta, Anil
背景技术背景：使用英国囊性纤维化数据库，我们分析了英国CF儿科人群（UKPP）的健康状况，包括他们的传记、临床和感染状况，并将结果与美国、法国和澳大利亚的CF登记进行了比较。UKPP数据收集了2，在2001年，673名年龄小于18岁的患者被用作与最新的CF登记研究报告进行比较的参考基础。尽管国家CF登记研究之间存在差异，但所有登记研究均记录了相似的人口统计学因素和关键结局。如果可以进行合理的比较，我们报告UKPP的中位年龄最大（15.0岁），澳大拉西亚人群的中位诊断年龄最低（1.8个月）。大约有两倍的UKPP患者（分别为23%和19%）的身高和体重低于第10百分位数，澳大拉西亚的结局相似。UKPP和法国人群中FEV1 >80%预测值的比例相似（分别为53%和54%）。结论：每个登记处的数据系统都是独立开发的，为国际比较迈出了第一步。需要对国家CF登记研究的数据收集标准和定义进行标准化，我们提出了一个标准化的最小数据集，这将促进数据整合，作为CF全球登记研究的一部分。
BACKGROUND: Using the UK Cystic Fibrosis Database, we analysed the health of the UK CF paediatric population (UKPP) in terms of their biographical, clinical and infection status and compared outcomes with the US, French and Australasian CF Registries.METHODS: UKPP data were collected for 2,673 patients aged less than 18 years in 2001 and used as a reference base for comparison with the most recent equivalent CF Registry reports.RESULTS: Although differences exist between National CF Registries, all record similar demographic factors and key outcomes. Where plausible comparisons can be made, we report that the UKPP had the oldest median age (15.0 years), the Australasian population had the lowest median age at diagnosis (1.8 months). Approximately, double the expected number of UKPP patients (23% and 19%, respectively) fall below the 10th centile for height and weight with similar outcomes in Australasia. UKPP and French populations had similar proportions with FEV1 >80% predicted (53% and 54%, respectively).CONCLUSION: Each Registry's data systems have developed independently providing a first step towards international comparisons. Standardisation of data collection criteria and definition for national CF Registries is required and we propose a standardised minimum data set, which would facilitate data integration as part of a global Registry for CF.