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, in...
Ausführliche Beschreibung

Gespeichert in:
Autor*in:

Ruseckaite, Rasa [verfasserIn]

Mudunna, Chethana

Caruso, Marisa

Helwani, Falak

Millis, Nicole

Lacaze, Paul

Ahern, Susannah

Format:

E-Artikel

Sprache:

Englisch

Erschienen:

2023

Schlagwörter:

Rare disease

Minimum data set

Registry

Patient outcomes

National approach

Anmerkung:

© The Author(s) 2023

Übergeordnetes Werk:

Enthalten in: Orphanet journal of rare diseases - London : BioMed Central, 2006, 18(2023), 1 vom: 27. Juli

Übergeordnetes Werk:

volume:18 ; year:2023 ; number:1 ; day:27 ; month:07

Links:

Volltext

DOI / URN:

10.1186/s13023-023-02823-1

Katalog-ID:

SPR052555585

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