The End Rheumatic Heart Disease in Australia Study of Epidemiology (ERASE) Project: data sources, case ascertainment and cohort profile

ERASE Consortia, Judith Katzenellenbogen, Daniela Bond-Smith, Rebecca Cunneen, Karen Dempsey, Jeffrey Cannon, Lee Nedkoff, Frank Sanfilippo, Nicholas De Klerk, Joe Hung, Elizabeth Geelhoed, Daniel Williamson, Rosemary Wyber, A.P. Ralph, Dawn Bessarab

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Abstract

Purpose: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) persist as public health issues in developing countries and among disadvantaged communities in high-income countries, with rates in Aboriginal and Torres Strait Islander peoples in Australia among the highest recorded globally. A robust evidence base is critical to support policy recommendations for eliminating RHD, but available data are fragmented and incomplete. The End RHD in Australia: Study of Epidemiology (ERASE) Project aims to provide a comprehensive database of ARF and RHD cases in Australia as a basis for improved monitoring and to assess prevention and treatment strategies. The objective of this paper is to describe the process for case ascertainment and profile of the study cohort.
Patients and methods: The ERASE database has been built using linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year). Additional linked datasets are available. The longitudinal nature of the data is harnessed to estimate onset and assess the progression of the disease. To accommodate systematic limitations in diagnostic coding for RHD, hospital-only identified RHD has been determined using a purposefully developed prediction model.
Results: Of 132,053 patients for whom data were received, 42,064 are considered true cases of ARF or RHD in the study period. The patient population under 60 years in the compiled dataset is more than double the number of patients identified in ARF/RHD registers (12,907 versus 5049). Non-registered patients were more likely to be older, non-Indigenous, and at a later disease stage.
Conclusion: The ERASE Project has created an unprecedented linked administrative database on ARF and RHD in Australia. These data provide a critical baseline for efforts to end ARF/RHD in Australia. The methodological work conducted to compile this database resulted in significant improvements in the robustness of epidemiological estimates and entails valuable lessons for ARF/RHD research globally.
Original languageEnglish
Pages (from-to)997—1010
JournalClinical Epidemiology
Volume2019
Issue number11
DOIs
Publication statusPublished - 15 Nov 2019

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Rheumatic Heart Disease
Information Storage and Retrieval
Epidemiology
Rheumatic Fever
Databases
Vulnerable Populations
Developing Countries
Registries
Disease Progression
Inpatients
Hospitalization
Cohort Studies
Public Health

Cite this

@article{a559406bc2cf449a8d1b85842dd38413,
title = "The End Rheumatic Heart Disease in Australia Study of Epidemiology (ERASE) Project: data sources, case ascertainment and cohort profile",
abstract = "Purpose: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) persist as public health issues in developing countries and among disadvantaged communities in high-income countries, with rates in Aboriginal and Torres Strait Islander peoples in Australia among the highest recorded globally. A robust evidence base is critical to support policy recommendations for eliminating RHD, but available data are fragmented and incomplete. The End RHD in Australia: Study of Epidemiology (ERASE) Project aims to provide a comprehensive database of ARF and RHD cases in Australia as a basis for improved monitoring and to assess prevention and treatment strategies. The objective of this paper is to describe the process for case ascertainment and profile of the study cohort.Patients and methods: The ERASE database has been built using linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year). Additional linked datasets are available. The longitudinal nature of the data is harnessed to estimate onset and assess the progression of the disease. To accommodate systematic limitations in diagnostic coding for RHD, hospital-only identified RHD has been determined using a purposefully developed prediction model.Results: Of 132,053 patients for whom data were received, 42,064 are considered true cases of ARF or RHD in the study period. The patient population under 60 years in the compiled dataset is more than double the number of patients identified in ARF/RHD registers (12,907 versus 5049). Non-registered patients were more likely to be older, non-Indigenous, and at a later disease stage.Conclusion: The ERASE Project has created an unprecedented linked administrative database on ARF and RHD in Australia. These data provide a critical baseline for efforts to end ARF/RHD in Australia. The methodological work conducted to compile this database resulted in significant improvements in the robustness of epidemiological estimates and entails valuable lessons for ARF/RHD research globally.",
author = "{ERASE Consortia} and Judith Katzenellenbogen and Daniela Bond-Smith and Rebecca Cunneen and Karen Dempsey and Jeffrey Cannon and Lee Nedkoff and Frank Sanfilippo and {De Klerk}, Nicholas and Joe Hung and Elizabeth Geelhoed and Daniel Williamson and Rosemary Wyber and A.P. Ralph and Dawn Bessarab",
year = "2019",
month = "11",
day = "15",
doi = "10.2147/CLEP.S224621",
language = "English",
volume = "2019",
pages = "997—1010",
journal = "Clinical Epidemiology",
issn = "1179-1349",
publisher = "Dove Medical Press Ltd.",
number = "11",

}

TY - JOUR

T1 - The End Rheumatic Heart Disease in Australia Study of Epidemiology (ERASE) Project

T2 - data sources, case ascertainment and cohort profile

AU - ERASE Consortia

AU - Katzenellenbogen, Judith

AU - Bond-Smith, Daniela

AU - Cunneen, Rebecca

AU - Dempsey, Karen

AU - Cannon, Jeffrey

AU - Nedkoff, Lee

AU - Sanfilippo, Frank

AU - De Klerk, Nicholas

AU - Hung, Joe

AU - Geelhoed, Elizabeth

AU - Williamson, Daniel

AU - Wyber, Rosemary

AU - Ralph, A.P.

AU - Bessarab, Dawn

PY - 2019/11/15

Y1 - 2019/11/15

N2 - Purpose: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) persist as public health issues in developing countries and among disadvantaged communities in high-income countries, with rates in Aboriginal and Torres Strait Islander peoples in Australia among the highest recorded globally. A robust evidence base is critical to support policy recommendations for eliminating RHD, but available data are fragmented and incomplete. The End RHD in Australia: Study of Epidemiology (ERASE) Project aims to provide a comprehensive database of ARF and RHD cases in Australia as a basis for improved monitoring and to assess prevention and treatment strategies. The objective of this paper is to describe the process for case ascertainment and profile of the study cohort.Patients and methods: The ERASE database has been built using linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year). Additional linked datasets are available. The longitudinal nature of the data is harnessed to estimate onset and assess the progression of the disease. To accommodate systematic limitations in diagnostic coding for RHD, hospital-only identified RHD has been determined using a purposefully developed prediction model.Results: Of 132,053 patients for whom data were received, 42,064 are considered true cases of ARF or RHD in the study period. The patient population under 60 years in the compiled dataset is more than double the number of patients identified in ARF/RHD registers (12,907 versus 5049). Non-registered patients were more likely to be older, non-Indigenous, and at a later disease stage.Conclusion: The ERASE Project has created an unprecedented linked administrative database on ARF and RHD in Australia. These data provide a critical baseline for efforts to end ARF/RHD in Australia. The methodological work conducted to compile this database resulted in significant improvements in the robustness of epidemiological estimates and entails valuable lessons for ARF/RHD research globally.

AB - Purpose: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) persist as public health issues in developing countries and among disadvantaged communities in high-income countries, with rates in Aboriginal and Torres Strait Islander peoples in Australia among the highest recorded globally. A robust evidence base is critical to support policy recommendations for eliminating RHD, but available data are fragmented and incomplete. The End RHD in Australia: Study of Epidemiology (ERASE) Project aims to provide a comprehensive database of ARF and RHD cases in Australia as a basis for improved monitoring and to assess prevention and treatment strategies. The objective of this paper is to describe the process for case ascertainment and profile of the study cohort.Patients and methods: The ERASE database has been built using linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year). Additional linked datasets are available. The longitudinal nature of the data is harnessed to estimate onset and assess the progression of the disease. To accommodate systematic limitations in diagnostic coding for RHD, hospital-only identified RHD has been determined using a purposefully developed prediction model.Results: Of 132,053 patients for whom data were received, 42,064 are considered true cases of ARF or RHD in the study period. The patient population under 60 years in the compiled dataset is more than double the number of patients identified in ARF/RHD registers (12,907 versus 5049). Non-registered patients were more likely to be older, non-Indigenous, and at a later disease stage.Conclusion: The ERASE Project has created an unprecedented linked administrative database on ARF and RHD in Australia. These data provide a critical baseline for efforts to end ARF/RHD in Australia. The methodological work conducted to compile this database resulted in significant improvements in the robustness of epidemiological estimates and entails valuable lessons for ARF/RHD research globally.

U2 - 10.2147/CLEP.S224621

DO - 10.2147/CLEP.S224621

M3 - Article

VL - 2019

SP - 997—1010

JO - Clinical Epidemiology

JF - Clinical Epidemiology

SN - 1179-1349

IS - 11

ER -