EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study
BackgroundChronic 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...
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doaj-b24bffba27b2462e8edad82d2e11605a2021-05-03T02:52:53ZengJMIR PublicationsJMIR Research Protocols1929-07482020-04-0194e1564610.2196/15646EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort StudyFoote, CelineHockham, CarinnaSukkar, LouisaCampain, AnnaKang, AmyYoung, TamaraCass, AlanChow, Clara KComino, ElizabethGallagher, MartinJan, StephenKnight, JohnLiu, BetteMcNamara, MartinPeiris, DavidPollock, CarolSullivan, DavidWong, GermaineZoungas, SophiaRogers, KrisJun, MinJardine, Meg BackgroundChronic 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. ObjectiveThis 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. MethodsIn 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. ResultsThe 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. ConclusionsThe 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)RR1-10.2196/15646https://www.researchprotocols.org/2020/4/e15646 |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Foote, Celine Hockham, Carinna Sukkar, Louisa Campain, Anna Kang, Amy Young, Tamara Cass, Alan Chow, Clara K Comino, Elizabeth Gallagher, Martin Jan, Stephen Knight, John Liu, Bette McNamara, Martin Peiris, David Pollock, Carol Sullivan, David Wong, Germaine Zoungas, Sophia Rogers, Kris Jun, Min Jardine, Meg |
spellingShingle |
Foote, Celine Hockham, Carinna Sukkar, Louisa Campain, Anna Kang, Amy Young, Tamara Cass, Alan Chow, Clara K Comino, Elizabeth Gallagher, Martin Jan, Stephen Knight, John Liu, Bette McNamara, Martin Peiris, David Pollock, Carol Sullivan, David Wong, Germaine Zoungas, Sophia Rogers, Kris Jun, Min Jardine, Meg EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study JMIR Research Protocols |
author_facet |
Foote, Celine Hockham, Carinna Sukkar, Louisa Campain, Anna Kang, Amy Young, Tamara Cass, Alan Chow, Clara K Comino, Elizabeth Gallagher, Martin Jan, Stephen Knight, John Liu, Bette McNamara, Martin Peiris, David Pollock, Carol Sullivan, David Wong, Germaine Zoungas, Sophia Rogers, Kris Jun, Min Jardine, Meg |
author_sort |
Foote, Celine |
title |
EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study |
title_short |
EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study |
title_full |
EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study |
title_fullStr |
EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study |
title_full_unstemmed |
EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (the EXTEND45 Study): Protocol for an Australian Linked Cohort Study |
title_sort |
examining outcomes in chronic disease in the 45 and up study (the extend45 study): protocol for an australian linked cohort study |
publisher |
JMIR Publications |
series |
JMIR Research Protocols |
issn |
1929-0748 |
publishDate |
2020-04-01 |
description |
BackgroundChronic 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.
ObjectiveThis 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.
MethodsIn 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.
ResultsThe 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.
ConclusionsThe 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 |
url |
https://www.researchprotocols.org/2020/4/e15646 |
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