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Current state of rare disease registries and databases in Australia: a scoping review

BACKGROUND: Rare diseases (RDs) affect approximately 8% of all people or > 400 million people globally. The Australian Government’s National Strategic Action Plan for Rare Diseases has identified the need for a national, coordinated, and systematic approach to the collection and use of RD data, i...

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Detalles Bibliográficos
Autores principales:	Ruseckaite, Rasa, Mudunna, Chethana, Caruso, Marisa, Helwani, Falak, Millis, Nicole, Lacaze, Paul, Ahern, Susannah
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2023
Materias:	Review
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10373259/ https://www.ncbi.nlm.nih.gov/pubmed/37501152 http://dx.doi.org/10.1186/s13023-023-02823-1

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