Current state of rare disease registries and databases in Australia: a scoping review.
Rasa RuseckaiteChethana MudunnaMarisa CarusoFalak HelwaniNicole MillisPaul LacazeSusannah AhernPublished in: Orphanet journal of rare diseases (2023)
This scoping review highlights the current state of Australian RDRs, identifying several important gaps and opportunities for improvement through national coordination and increased investment.
Keyphrases