Informing a national rare disease registry strategy in Australia: a mixed methods study

• Autors principals: Rasa Ruseckaite (Autor), Marisa Caruso (Autor), Chethana Mudunna (Autor), Falak Helwani (Autor), Nicole Millis (Autor), Susannah Ahern (Autor)
• Format: Llibre
• Publicat: BMC, 2023-10-01T00:00:00Z.
• Matèries: article
• Accés en línia: Connect to this object online.

Abstract Background Rare disease registries (RDRs) facilitate monitoring of rare diseases by pooling small datasets to increase clinical and epidemiological knowledge of rare diseases and promote patient centred best practice. The aim of this study was to understand the current state of RDRs in Aust...