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Transition from childhood to adulthood in neuromuscular disorders: results from the ERN EURO-NMD survey.
Data accuracy in the European Cystic Fibrosis Society Patient Registry: results of an on-site data validation project.
The Healthcare Amyloidosis European Registry (HEAR): design of a national registry with a European extension strategy, and foundation of the F-CRIN GRACE network.
Developing a standard dataset in the European registries for rare endocrine and bone conditions-a Melorheostosis dataset.
Genetic profiling and diagnostic strategies for patients with ectodermal dysplasias in Korea.