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

Abstract 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...

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Bibliographic Details

Published in:	Orphanet Journal of Rare Diseases
Main Authors:	Rasa Ruseckaite, Chethana Mudunna, Marisa Caruso, Falak Helwani, Nicole Millis, Paul Lacaze, Susannah Ahern
Format:	Article
Language:	English
Published:	BMC 2023-07-01
Subjects:	Rare disease Minimum data set Registry Patient outcomes National approach
Online Access:	https://doi.org/10.1186/s13023-023-02823-1