Titlebook: Rare Diseases Epidemiology: Update and Overview; Manuel Posada de la Paz,Domenica Taruscio,Stephen Book 2017Latest edition This is a U.S.

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pessimism

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意見(jiàn)一致

Rare Disease Biospecimens and Patient Registries: Interoperability for Research Promotion, a Europeaially important for rare disease (RD) studies. Several consortia have been established in the recent years in order to facilitate research and to maximise access to rare biological samples and data stored in rare disease biobanks and registries, among them the EuroBioBank network and the Spain Natio

ENACT

Data Quality in Rare Diseases Registriesrials, to improve patient care and healthcare planning. Therefore high quality data of rare diseases registries is considered to be one of the most important element in the establishment and maintenance of a registry. Data quality can be defined as the totality of features and characteristics of dat