Tuesday, 20 September 2016

Australian Cystic Fibrosis Data Registry comes to SPHPM

Earlier this month SPHPM welcomed the Australian Cystic Fibrosis Data Registry (ACFDR) and the Registry’s Director / Data Manager Geoff Sims to the fold, as the School took over operations of the ACFDR on September 1.

SPHPM now houses 22 registries monitoring procedures, diseases or healthcare services providing epidemiologically sound data to clinicians. The importance of registries as a strategy for improving safety and quality of healthcare has been recognised internationally.


Cystic Fibrosis (CF) is the most common, genetically acquired, life-shortening chronic illness affecting young Australians today. In Australia approximately one in every 3,600 babies are born with CF and will require constant medical treatments and physiotherapy over their lifetime.

The ACFDR commenced in 1998 as a collaboration between Cystic Fibrosis Australia (CFA) and the Directors of Cystic Fibrosis treatment centres. All Australian treatment centres submit data to the ACFDR, which holds longitudinal data for around 4,300 persons with Cystic Fibrosis (3,300 current at 2014).

Geoff has been managing the ACFD registry for 14 years and is excited to see how the registry will develop within a multi-skilled specialist clinical registry management environment.

“I enjoy developing and analysing statistics to inform decisions in a real-world environment. It's particularly satisfying to see data contributing to knowledge that informs improvement in clinical care,” said Sims.

Annual data reports covering demographic, genotype and phenotype information, clinical indicators, treatments, social characteristics, organ transplants and deaths have been published up to 2014 by CFA. Since the introduction of an online database system in 2006, Cystic Fibrosis centres have had access to downloadable reports and data extracts for their own patients.

“With the registry now housed within a university, it is also likely to benefit from greater exposure and from the potential for increased research collaboration and be better positioned to meet challenges of further development in an eHealth environment and within a national registries infrastructure, should that emerge,” said Sims.

Data entry options also expanded to include XML file uploads from centres using a commercial electronic medical records (EMR) system. Centre Directors have also received annual benchmarking reports and own-centre trend reports. Researchers accessing data with the approval of the registry’s Advisory Committee and Ethics Committee have contributed to a growing list of published studies, including from collaborations with other national Cystic Fibrosis registries.

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