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 Rogers; Min Jun; Meg Jardine

doi:10.2196/15646

EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study

JMIR Res Protoc. 2020 Apr 14;9(4):e15646. doi: 10.2196/15646.

Authors

Celine Foote^{1

2}, Carinna Hockham^{1

3}, Louisa Sukkar^{1

4}, Anna Campain^{1

3}, Amy Kang^{1

3}, Tamara Young^{1

3}, Alan Cass⁵, Clara K Chow^{1

6

7}, Elizabeth Comino⁸, Martin Gallagher^{1

2

3

9}, Stephen Jan^{1

3

9}, John Knight^{1

3}, Bette Liu¹⁰, Martin McNamara¹¹, David Peiris^{1

3}, Carol Pollock^{12

13}, David Sullivan^{9

14}, Germaine Wong^{4

15}, Sophia Zoungas^{1

16}, Kris Rogers^{1

17}, Min Jun^{1

3}, Meg Jardine^{1

2}

Affiliations

¹ The George Institute for Global Health, Sydney, Australia.
² Concord Repatriation General Hospital, Sydney, Australia.
³ Faculty of Medicine, University of New South Wales, Sydney, Australia.
⁴ School of Public Health, University of Sydney, Sydney, Australia.
⁵ Menzies School of Health Research, Charles Darwin University, Darwin, Australia.
⁶ Westmead Applied Research Centre, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
⁷ Department of Cardiology, Westmead Hospital, Sydney, Australia.
⁸ Centre for Primary Health Care and Equity, University of New South Wales, Sydney, Australia.
⁹ Sydney Medical School, University of Sydney, Sydney, Australia.
¹⁰ School of Public Health and Community Medicine, University of New South Wales, Sydney, Australia.
¹¹ The Sax Institute, Sydney, Australia.
¹² Renal Division, Kolling Institute for Medical Research, Sydney, Australia.
¹³ University of Sydney, Sydney, Australia.
¹⁴ Department of Chemical Pathology, Royal Prince Alfred Hospital, Sydney, Australia.
¹⁵ Centre for Transplant and Renal Research, Westmead Hospital, Sydney, Australia.
¹⁶ School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
¹⁷ Graduate School of Health, University of Technology Sydney, Sydney, Australia.

PMID: 32285803
PMCID: PMC7189250
DOI: 10.2196/15646

Abstract

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.

International registered report identifier (irrid): RR1-10.2196/15646.

Keywords: biomarkers; cardiovascular disease; chronic kidney disease; data linkage; diabetes mellitus.

©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 Rogers, Min Jun, Meg Jardine. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 14.04.2020.