Examining outcomes in chronic disease in the 45 and up study (the EXTEnD45 study): Protocol for an Australian linked cohort study

Celine Foote, Carinna Hockham, Louisa Sukkar, Anna Campain, Amy Kang, Tamara Young, Alan Cass, Clara K. Chow, Elizabeth Comino, Martin Gallagher, Stephen Jan, John Knight, Bette Liu, Martin McNamara, David Peiris, Carol Pollock, David Sullivan, Germaine Wong, Sophia Zoungas, Kris RogersMin Jun, Meg Jardine

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Background: Chronic kidney disease (CKD) and diabetes are the major causes of death and disability worldwide. They are associated with high health service utilization persisting over many years. Their slow progression and wide clinical variation make them eminently suitable for study in population-based cohorts. However, current understanding of their prevalence, incidence, and progression is largely based on studies conducted in clinical populations. 

Objective: This study aims to establish a novel link between an existing population-based cohort (the 45 and Up Study) and routinely collected laboratory and administrative data to facilitate research across the full disease spectrum of CKD and diabetes. Methods: In the EXTEND45 Study (EXamining OuTcomEs in chroNic Disease in the 45 and Up Study), baseline questionnaire responses of over 260,000 participants of the 45 and Up Study aged ≥45 years living in New South Wales (NSW), collected between January 2006 and December 2009, are linked to data from laboratory service providers as well as national- and state-based administrative datasets via probabilistic linkage. Routinely collected data were obtained for participants who could be linked between January 2005 and July 2013. Laboratory data will enable the identification of early cases of chronic disease and the assessment of clinically relevant biochemical targets during the disease course. Health administrative datasets will allow for the examination of health service use, pharmacological management, and clinical outcomes. 

Results: The study received ethics approval from the NSW Population and Health Services Research Ethics Committee in February 2014. Data linkage for 267,153 of the 45 and Up Study participants was completed in June 2016, with congruent linkage achieved for 265,086 (99.23%) individuals. To date, the CKD and diabetes cohorts have been identified (published elsewhere), and a diverse portfolio of research projects relating to disease burden, risk factors, health outcomes, and health service utilization is in development. 

Conclusions: The EXTEND45 Study represents an unparalleled opportunity to perform extensive research into diseases of considerable public health and clinical importance. Strengths include the population-based nature of the cohort and the availability of longitudinal information on the complete disease pathway for affected individuals.

Original languageEnglish
Article numbere15646
Pages (from-to)1-11
Number of pages11
JournalJMIR Research Protocols
Issue number4
Publication statusPublished - Apr 2020


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