ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data Collection

Background: Fertility clinics submit treatment data on all ART cycles to the Australian and New Zealand Assisted Reproductive Technology Database (ANZARD) as part of their accreditation. The National Perinatal Epidemiology and Statistics Unit (NPESU), who manages ANZARD, is undertaking a study invol...

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Main Authors: Georgina M. CHAMBERS, Stephanie K.Y. CHOI, Katie IRVINE, Christos VENETIS, Katie HARRIS, Alys HAVARD, Robert J. NORMAN, Kei LUI, William LEDGER, Louisa R. JORM
Format: Article
Language:English
Published: World Scientific Publishing 2022-09-01
Series:Fertility & Reproduction
Online Access:https://www.worldscientific.com/doi/10.1142/S2661318222740875
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author Georgina M. CHAMBERS
Stephanie K.Y. CHOI
Katie IRVINE
Christos VENETIS
Katie HARRIS
Alys HAVARD
Robert J. NORMAN
Kei LUI
William LEDGER
Louisa R. JORM
author_facet Georgina M. CHAMBERS
Stephanie K.Y. CHOI
Katie IRVINE
Christos VENETIS
Katie HARRIS
Alys HAVARD
Robert J. NORMAN
Kei LUI
William LEDGER
Louisa R. JORM
author_sort Georgina M. CHAMBERS
collection DOAJ
description Background: Fertility clinics submit treatment data on all ART cycles to the Australian and New Zealand Assisted Reproductive Technology Database (ANZARD) as part of their accreditation. The National Perinatal Epidemiology and Statistics Unit (NPESU), who manages ANZARD, is undertaking a study involving the linkage of ANZARD to state and commonwealth datasets to investigate health outcomes of infants born from fertility treatments. Aim: To describe the creation and performance of the linked dataset and to evaluate the agreement between births recorded by clinics and those recorded in state perinatal data collections (PDC). Method: The linked dataset was created by linking the ANZARD to NSW and ACT administrative datasets (performed by NSW Centre for Health Record Linkage (CHeReL)) and to Medicare Benefits Scheme and Pharmaceutical Benefits Schedule (performed by AIHW). The CHeReL’s Master Linkage Key (MLK) was used as a bridge between ANZARD’s statistical linkage key and state administrative datasets. Linkage rates and concordance between births recorded in ANZARD and PDCs was evaluated. Results: A 96.7% linkage rate was achieved between women recorded in ANZARD and CHeReL’s MLKs. A reconciliation of ANZARD-recorded births among NSW residents found that 94.2% (95% CI: 93.9-94.4%) of births were also recorded in NSW/ACT PDCs. A proportion of the missing births could be to women who had ART treatment in NSW but birthed in a different Australian state or country. A high concordance rate (>99%) was found in plurality status and birth outcome between ANZARD and PDCs. Conclusion: High linkage rates can be achieved with partially identifiable data and population spines, such as the CHeReL’s MLK, can be successfully used to link clinical registries and administrative datasets. This linkage resource will provide invaluable information on the safety of the ART and non-ART treatment, and the role of subfertility on the fertility treatments for Australia and beyond.
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spelling doaj.art-aefe100465134837ba745710c10d9c9e2022-12-22T04:11:24ZengWorld Scientific PublishingFertility & Reproduction2661-31822661-31742022-09-010403n0417617610.1142/S2661318222740875ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data CollectionGeorgina M. CHAMBERS0Stephanie K.Y. CHOI1Katie IRVINE2Christos VENETIS3Katie HARRIS4Alys HAVARD5Robert J. NORMAN6Kei LUI7William LEDGER8Louisa R. JORM9Centre or Big Data Research in Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaCentre or Big Data Research in Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaMinistry of Health, New South Wales, AustraliaCentre or Big Data Research in Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaThe George Institute for Global Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaCentre or Big Data Research in Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaThe Robinson Research Institute, The University of Adelaide, Adelaide, South Australia, AustraliaSchool of Women’s and Children’s Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaSchool of Women’s and Children’s Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaCentre or Big Data Research in Health, Faculty of Medicine, University of New South Wales, Sydney, AustraliaBackground: Fertility clinics submit treatment data on all ART cycles to the Australian and New Zealand Assisted Reproductive Technology Database (ANZARD) as part of their accreditation. The National Perinatal Epidemiology and Statistics Unit (NPESU), who manages ANZARD, is undertaking a study involving the linkage of ANZARD to state and commonwealth datasets to investigate health outcomes of infants born from fertility treatments. Aim: To describe the creation and performance of the linked dataset and to evaluate the agreement between births recorded by clinics and those recorded in state perinatal data collections (PDC). Method: The linked dataset was created by linking the ANZARD to NSW and ACT administrative datasets (performed by NSW Centre for Health Record Linkage (CHeReL)) and to Medicare Benefits Scheme and Pharmaceutical Benefits Schedule (performed by AIHW). The CHeReL’s Master Linkage Key (MLK) was used as a bridge between ANZARD’s statistical linkage key and state administrative datasets. Linkage rates and concordance between births recorded in ANZARD and PDCs was evaluated. Results: A 96.7% linkage rate was achieved between women recorded in ANZARD and CHeReL’s MLKs. A reconciliation of ANZARD-recorded births among NSW residents found that 94.2% (95% CI: 93.9-94.4%) of births were also recorded in NSW/ACT PDCs. A proportion of the missing births could be to women who had ART treatment in NSW but birthed in a different Australian state or country. A high concordance rate (>99%) was found in plurality status and birth outcome between ANZARD and PDCs. Conclusion: High linkage rates can be achieved with partially identifiable data and population spines, such as the CHeReL’s MLK, can be successfully used to link clinical registries and administrative datasets. This linkage resource will provide invaluable information on the safety of the ART and non-ART treatment, and the role of subfertility on the fertility treatments for Australia and beyond.https://www.worldscientific.com/doi/10.1142/S2661318222740875
spellingShingle Georgina M. CHAMBERS
Stephanie K.Y. CHOI
Katie IRVINE
Christos VENETIS
Katie HARRIS
Alys HAVARD
Robert J. NORMAN
Kei LUI
William LEDGER
Louisa R. JORM
ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data Collection
Fertility & Reproduction
title ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data Collection
title_full ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data Collection
title_fullStr ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data Collection
title_full_unstemmed ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data Collection
title_short ANZARD Data Linkage – Agreement Between Births Recorded by Clinics and in NSW Perinatal Data Collection
title_sort anzard data linkage agreement between births recorded by clinics and in nsw perinatal data collection
url https://www.worldscientific.com/doi/10.1142/S2661318222740875
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