{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T07:36:01Z","timestamp":1789025761365,"version":"build-2803163510"},"reference-count":27,"publisher":"CSIRO Publishing","issue":"1","funder":[{"name":"END RHD Centre for Research Excellence (NHMRC)","award":["1080401"],"award-info":[{"award-number":["1080401"]}]},{"name":"NHMRC Fellowship","award":["GNT2025252"],"award-info":[{"award-number":["GNT2025252"]}]},{"DOI":"10.13039\/501100000925","name":"NHMRC","doi-asserted-by":"crossref","award":["1146525"],"award-info":[{"award-number":["1146525"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"crossref"}]},{"name":"NHMRC post-graduate scholarship","award":["2005398"],"award-info":[{"award-number":["2005398"]}]},{"name":"Heart Kids"},{"name":"Ad Hoc Postgraduate Scholarship, The University of Western Australia"},{"name":"Heart Foundation of Australia Future Leader Fellowship","award":["102043"],"award-info":[{"award-number":["102043"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Aust. Health Rev."],"accepted":{"date-parts":[[2024,9,25]]},"abstract":"<jats:p>Objective   In Australia, accurate case ascertainment of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) diagnoses for disease surveillance and control purposes requires the use of multiple data sources, including RHD registers and hospitalisation records. Despite drawing on multiple data sources, the true burden of ARF\/RHD is likely to be underestimated.     Methods   This study used capture\u2013recapture methods to quantify the missing number of ARF\/RHD cases in data from hospitals and jurisdictional RHD registers. Linked datasets comprised reported cases of ARF\/RHD in register records and administrative hospital data.     Results   Capture\u2013recapture analyses indicated the total number of new ARF\/RHD cases in three Australian jurisdictions (Queensland, South Australia and Western Australia), among people aged 3\u201354\u00a0years, was 3480 (95% CI\u00a0=\u00a03366\u20133600) during 2011\u20132016. This included 894 (25.7%) individuals who were not listed in either the hospital or register datasets. Non-Indigenous, urban and older people with ARF\/RHD were least likely to be identified in either the hospital or register data sources.     Conclusions   The 894 likely ARF\/RHD cases our analyses detected that are not included in the routine surveillance datasets are concerning and quantify the magnitude and characteristics of under-notification to RHD registers in Australia, especially for groups that are not typically at high risk of ARF.<\/jats:p>","DOI":"10.1071\/ah24267","type":"journal-article","created":{"date-parts":[[2024,10,16]],"date-time":"2024-10-16T22:56:30Z","timestamp":1729119390000},"source":"Crossref","is-referenced-by-count":7,"title":["Estimating the true number of people with acute rheumatic fever and rheumatic heart disease from two data sources using capture\u2013recapture methodology"],"prefix":"10.1071","volume":"49","author":[{"given":"Joanne","family":"Thandrayen","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid","family":"Stacey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Oliver","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carl","family":"Francia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith M.","family":"Katzenellenbogen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosemary","family":"Wyber","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"67","published-online":{"date-parts":[[2024,10,17]]},"reference":[{"key":"AH24267R1","doi-asserted-by":"publisher","DOI":"10.1038\/nrdp.2015.84","article-title":"Acute rheumatic fever and rheumatic heart disease.","volume":"2","year":"2016","journal-title":"Nat Rev Dis Primers"},{"issue":"3","key":"AH24267R2","doi-asserted-by":"publisher","DOI":"10.1093\/ehjopen\/oeab035","article-title":"Long-term outcomes following rheumatic heart disease diagnosis in Australia.","volume":"1","year":"2021","journal-title":"Eur Heart J Open"},{"issue":"10","key":"AH24267R3","doi-asserted-by":"publisher","first-page":"S1","DOI":"10.5694\/mja2.50853","article-title":"Ending rheumatic heart disease in Australia: the evidence for a new approach.","volume":"213","year":"2020","journal-title":"Med J Aust"},{"issue":"4","key":"AH24267R4","doi-asserted-by":"publisher","first-page":"170","DOI":"10.5694\/mja2.52222","article-title":"Australia\u2019s rheumatic fever strategy three years on.","volume":"220","year":"2024","journal-title":"Med J Aust"},{"key":"AH24267R5","unstructured":"Department of Health, Victoria. Notification of Rheumatic Heart Disease and Acute Rhematic Fever. 2023. Available at  [accessed 13 September 2024]."},{"key":"AH24267R6","unstructured":"Commonwealth of Australia, Canberra. Rheumatic Fever Strategy: national partnership agreement on specified projects. Federal Financial Relations Australia CCo (Ed.); 2018."},{"key":"AH24267R7","doi-asserted-by":"publisher","first-page":"997","DOI":"10.2147\/CLEP.S224621","article-title":"The End Rheumatic Heart Disease in Australia Study of Epidemiology (ERASE) Project: Data sources, case ascertainment and cohort profile.","volume":"11","year":"2019","journal-title":"Clin Epidemiol"},{"issue":"15","key":"AH24267R8","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph17155505","article-title":"Case Ascertainment on Australian Registers for Acute Rheumatic Fever and Rheumatic Heart Disease.","volume":"17","year":"2020","journal-title":"Int J Environ Res Public Health"},{"key":"AH24267R9","doi-asserted-by":"crossref","unstructured":"Stacey I, Knight Y, Ong CMX, . Notification of acute rheumatic fever and rheumatic heart disease in hospitalised people in the Midwest region of Western Australia, 2012-2022: a retrospective cohort study.  2024.","DOI":"10.5694\/mja2.52477"},{"issue":"1","key":"AH24267R10","article-title":"Incidence of bacterial meningitis (2001\u20132005) in Lazio, Italy: the results of a integrated surveillance system.","volume":"9","year":"2009","journal-title":"BMC Infect Dis"},{"issue":"5","key":"AH24267R11","doi-asserted-by":"publisher","first-page":"383","DOI":"10.1016\/j.respe.2012.03.007","article-title":"Estimating the burden of mucormycosis infections in France (2005\u20132007) through a capture\u2013recapture method on laboratory and administrative data.","volume":"60","year":"2012","journal-title":"Rev Epidemiol Sante Publique"},{"issue":"2","key":"AH24267R12","doi-asserted-by":"publisher","first-page":"265","DOI":"10.1017\/S0950268817002734","article-title":"Estimating the likely true changes in rheumatic fever incidence using two data sources.","volume":"146","year":"2018","journal-title":"Epidemiol Infect"},{"key":"AH24267R13","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-021-12398-w","article-title":"Capture\u2013recapture based study on the completeness of smear positive pulmonary tuberculosis reporting in southwest Iran during 2016.","volume":"21","year":"2021","journal-title":"BMC Public Health"},{"issue":"2","key":"AH24267R14","doi-asserted-by":"publisher","first-page":"308","DOI":"10.1111\/irv.12924","article-title":"Using capture\u2013recapture methods to estimate influenza hospitalization incidence rates.","volume":"16","year":"2022","journal-title":"Influenza Other Respir Viruses"},{"key":"AH24267R15","unstructured":"Australian Bureau of Statistics, Canberra. Estimates of Aboriginal and Torres Strait Islander Australians. 2021. Available at  [accessed 13 September 2024]."},{"key":"AH24267R16","unstructured":"Independent Hospital Pricing Authority, Australia. Australian Consortium for Classification Development. International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Australian Modification. 2017. 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