Measuring the impact of rare diseases in Tasmania, Australia.

ABSTRACT:

Background

An ongoing challenge with rare diseases is limited data and, consequently, limited knowledge about the collective prevalence and impact of these conditions on individuals, families, and the health system, particularly in rural and regional areas. Using existing datasets, this project aimed to examine the epidemiology of and hospital activity for Tasmanians with rare diseases.

Methods

Rare diseases were defined as non-infectious diseases with a prevalence of less than 1 in 2000. An initial resource set of 1028 ICD-10-AM diagnostic codes was used to identify a cohort of Tasmanians with rare diseases in Tasmanian Health datasets (1 January 2007 until 31 December 2020). Validating the resource set using a small group with known rare diseases revealed limitations in as

SUBMITTER: Scanlon P 

PROVIDER: S-EPMC11514960 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature