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

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 Australia, d...

Descripción completa

Detalles Bibliográficos
Autores principales: Ruseckaite, Rasa, Caruso, Marisa, Mudunna, Chethana, Helwani, Falak, Millis, Nicole, Ahern, Susannah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10619239/
https://www.ncbi.nlm.nih.gov/pubmed/37907945
http://dx.doi.org/10.1186/s12913-023-10049-x

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10619239/
https://www.ncbi.nlm.nih.gov/pubmed/37907945
http://dx.doi.org/10.1186/s12913-023-10049-x

Ejemplares similares