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Background Country-specific patient rare disease registries are rarely used to make international comparisons because of protocol discrepancies in data collation. Here, we attempt to overcome this limitation by using the inherited disease Cystic Fibrosis (CF) as a paradigm. CF provides a good example because its common form (homozygous F508del-CFTR) occurs across all European social strata appearing frequently but randomly thus providing an opportunity to measure health outcomes.

Comparative demographics of the European Cystic Fibrosis population: does EU membership confer an advantage?