{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,14]],"date-time":"2026-09-14T21:32:48Z","timestamp":1789421568189,"version":"build-2803163510"},"reference-count":29,"publisher":"BMJ","issue":"12","license":[{"start":{"date-parts":[[2022,12,30]],"date-time":"2022-12-30T00:00:00Z","timestamp":1672358400000},"content-version":"unspecified","delay-in-days":29,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"Green Lane Research and Education Fund","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}]},{"name":"A+ Charitable Trust","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}]},{"name":"Heart Foundation of New Zealand","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2022,12,5]]},"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>To create a cohort with high specificity for moderate and severe rheumatic heart disease (RHD) in New Zealand, not reliant on International Classification of Diseases discharge coding. To describe the demography and cardiac profile of this historical and contemporary cohort.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design and participants<\/jats:title>\n                    <jats:p>Retrospective identification of moderate or severe RHD with disease onset by 2019. Case identification from the following data sources: cardiac surgical databases, RHD case series, percutaneous balloon valvuloplasty databases, echocardiography databases, regional rheumatic fever registers and RHD clinic lists. The setting for this study was a high-income country with continued incidence of acute rheumatic fever (ARF).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings to date<\/jats:title>\n                    <jats:p>A Registry cohort of 4959 patients was established. The initial presentation was RHD without recognised prior ARF in 41%, and ARF in 59%. Ethnicity breakdown: M\u0101ori 38%, Pacific 33.5%, European 21.9%, other 6.7%. Ethnic disparities have changed significantly over time. Prior to 1960, RHD cases were 64.3% European, 25.3% M\u0101ori and 6.7% Pacific. However, in contrast, from 2010 to 2019, RHD cases were 10.7% European, 37.4% M\u0101ori and 47.2% Pacific.<\/jats:p>\n                    <jats:p>Follow-up showed 32% had changed region of residence within New Zealand from their initial presentation. At least one cardiac intervention (cardiac surgery, transcatheter balloon valvuloplasty) was undertaken in 64% of the cohort at a mean age of 40 years. 19.8% of the cohort had multiple cardiac interventions. At latest follow-up, 26.9% of the cohort died. Of those alive, the mean follow-up is 20.5+19.4 years. M\u0101ori and Pacific led governance groups have been established to provide data governance and oversight for the registry.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Future plans<\/jats:title>\n                    <jats:p>Detailed mortality and morbidity of the registry cases will be defined by linkage to New Zealand national health data collections. The contemporary cohort of the registry will be available for future studies to improve clinical management and outcomes for the 3450 individuals living with chronic RHD.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2022-066232","type":"journal-article","created":{"date-parts":[[2022,12,30]],"date-time":"2022-12-30T10:10:32Z","timestamp":1672395032000},"page":"e066232","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":7,"title":["Cohort profile: methodology and cohort characteristics of the Aotearoa New Zealand Rheumatic Heart Disease Registry"],"prefix":"10.1136","volume":"12","author":[{"given":"Elizabeth","family":"Tilton","sequence":"first","affiliation":[{"name":"Green Lane Paediatric and Congenital Cardiac Services, Starship Children's Health, Te Whatu Ora \u2013 Health New Zealand, Te Toka Tumai Auckland, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bryan","family":"Mitchelson","sequence":"additional","affiliation":[{"name":"Green Lane Paediatric and Congenital Cardiac Services, Starship Children's Health, Te Whatu Ora \u2013 Health New Zealand, Te Toka Tumai Auckland, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anneka","family":"Anderson","sequence":"additional","affiliation":[{"name":"Te Kupenga Hauora M\u0101ori, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Briar","family":"Peat","sequence":"additional","affiliation":[{"name":"General Medicine, Middlemore Hospital, Te Whatu Ora \u2013 Health New Zealand, Counties Manukau, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan","family":"Jack","sequence":"additional","affiliation":[{"name":"Public Health South, Southern District Health Board, Dunedin, New Zealand"},{"name":"Department of Preventive and Social Medicine, University of Otago, Dunedin, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mayanna","family":"Lund","sequence":"additional","affiliation":[{"name":"Cardiology Department, Middlemore Hospital, Te Whatu Ora \u2013 Health New Zealand, Counties Manukau, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Webb","sequence":"additional","affiliation":[{"name":"Department of Paediatric Infectious Diseases, Starship Children's Health, Te Whatu Ora \u2013 Health New Zealand, Te Toka Tumai Auckland, Auckland, New Zealand"},{"name":"7KidzFirst Children\u2019s Hospital, Te Whatu Ora \u2013 Health New Zealand, Counties Manukau, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0551-4655","authenticated-orcid":false,"given":"Nigel","family":"Wilson","sequence":"additional","affiliation":[{"name":"Green Lane Paediatric and Congenital Cardiac Services, Starship Children's Health, Te Whatu Ora \u2013 Health New Zealand, Te Toka Tumai Auckland, Auckland, New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2022,12,30]]},"reference":[{"key":"2025121514573942000_12.12.e066232.1","unstructured":"New Zealand Heart Foundation . New Zealand guidelines for rheumatic fever: diagnosis, management and secondary prevention of acute rheumatic fever and rheumatic heart disease: 2014 update. Auckland, 2014."},{"key":"2025121514573942000_12.12.e066232.2","doi-asserted-by":"crossref","first-page":"36","DOI":"10.3201\/eid2701.191791","article-title":"Rising ethnic inequalities in acute rheumatic fever and rheumatic heart disease, New Zealand, 2000-2018","volume":"27","author":"Bennett","year":"2021","journal-title":"Emerg Infect Dis"},{"key":"2025121514573942000_12.12.e066232.3","unstructured":"Ministry of Health \u2013 Manat\u016b Hauora . Reducing rheumatic fever. Wellington, New Zealand: Ministry of Health \u2013 Manat\u016b Hauora, 2021. Available: https:\/\/www.health.govt.nz\/our-work\/diseases-and-conditions\/rheumatic-fever\/reducing-rheumatic-fever [Accessed 16 May 2022]."},{"key":"2025121514573942000_12.12.e066232.4","doi-asserted-by":"crossref","first-page":"15084","DOI":"10.1038\/nrdp.2015.84","article-title":"Acute rheumatic fever and rheumatic heart disease","volume":"2","author":"Carapetis","year":"2016","journal-title":"Nat Rev Dis Primers"},{"key":"2025121514573942000_12.12.e066232.5","first-page":"47","article-title":"Rheumatic fever recurrences in New Zealand 2010-14","volume":"133","author":"Dennison","year":"2020","journal-title":"N Z Med 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National minimum dataset (Hospital events). The National minimum dataset (NMDS) is a national collection of public and private hospital discharge information, including coded clinical data for inpatients and day patients. Wellington, New Zealand: Ministry of health \u2013 Manat\u016b Hauora, 2021. 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