2015
DOI: 10.1111/imj.12898
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Need for a roadmap for development of a coordinated national registry programme

Abstract: Clinical quality registries are an overlooked and under-funded arm of clinical research in Australia. Registries are databases for patients with a particular disease, or who undergo a procedure, or use a health resource. Registries, where properly funded and universally adopted, have provided substantial benefits to the quality of healthcare and, in some cases, have had demonstrable effect in reducing costs. There is a lack of a coordinated programme for both funding and development of registries in Australia.… Show more

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Cited by 4 publications
(3 citation statements)
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“…The Swedish government has recognized quality registries as a priority and has sought to increase necessary funding, which reached $US45m p.a. in 2013 [78]. The operation and value of a registry must be routinely examined to ensure that the purpose still holds and is being achieved.…”
Section: Practicalities Of Hosting a Dementia Registry And Recommendamentioning
confidence: 99%
“…The Swedish government has recognized quality registries as a priority and has sought to increase necessary funding, which reached $US45m p.a. in 2013 [78]. The operation and value of a registry must be routinely examined to ensure that the purpose still holds and is being achieved.…”
Section: Practicalities Of Hosting a Dementia Registry And Recommendamentioning
confidence: 99%
“…Without such a mechanism, the current system of registration and subsidisation biases diseases that occur with higher frequency. Other authors have made similar proposals, suggesting the need for improved research design and more integrated and accessible data systems, such as nationwide registers, that can better encompass populations typically excluded from ‘gold standard’ research . Registers are an underused resource in Australian clinical research that would inform clinical and policy decision‐making with potential savings for healthcare systems …”
Section: Discussionmentioning
confidence: 99%
“…A recent review of ACFDR data completeness highlights this. As with all registries, sustained investment to support data collection, management, reporting and analysis is critical . The ACFDR has benefitted from the commitment of its funder CFA since its inception; however, given the changing demographics of the CF patient population with more living well into adulthood and the growing complexity of CF complications, the ACFDR has a broader requirement to provide ongoing accurate information on which to base clinical care decisions and support research activities for this patient group.…”
mentioning
confidence: 99%