{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,10]],"date-time":"2026-02-10T17:01:25Z","timestamp":1770742885464,"version":"3.49.0"},"reference-count":19,"publisher":"CSIRO Publishing","issue":"2","license":[{"start":{"date-parts":[[2025,11,18]],"date-time":"2025-11-18T00:00:00Z","timestamp":1763424000000},"content-version":"vor","delay-in-days":280,"URL":"https:\/\/doi.org\/10.1071\/journalslicense"}],"funder":[{"name":"Medical Research Future Fund","award":["ARGCHDG0000028"],"award-info":[{"award-number":["ARGCHDG0000028"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,4,3]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This paper aims to identify and describe legislative and administrative barriers to hospital participation and national data linkage for the National Australian Congenital Heart Disease (CHD) Registry.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A narrative review based on the National Australian CHD Registry experience of establishing participating hospital sites and national linkages associated with each jurisdiction.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>There were numerous identified barriers that could be overcome with additional resources\/time, and barriers that could not be overcome, reported by jurisdiction.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>There is a pressing need for greater harmonisation of state-based legislation governing research and harmonisation of administration to reduce duplication. Substantial state-based differences hinder the establishment of a truly national registry.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1071\/ah24338","type":"journal-article","created":{"date-parts":[[2025,2,10]],"date-time":"2025-02-10T16:41:46Z","timestamp":1739205706000},"source":"Crossref","is-referenced-by-count":1,"title":["State- and territory-based differences that impede the establishment of a harmonised national registry"],"prefix":"10.1071","volume":"49","author":[{"given":"Larissa K.","family":"Lloyd","sequence":"first","affiliation":[{"name":"AClinical Research Group, Heart Research Institute, Sydney, NSW 2042, Australia."},{"name":"BCardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia."},{"name":"CFaculty of Medicine, The University of Sydney, Sydney, NSW 2050, Australia."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Calum","family":"Nicholson","sequence":"additional","affiliation":[{"name":"AClinical Research Group, Heart Research Institute, Sydney, NSW 2042, Australia."},{"name":"BCardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia."},{"name":"CFaculty of Medicine, The University of Sydney, Sydney, NSW 2050, Australia."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Geoff","family":"Strange","sequence":"additional","affiliation":[{"name":"AClinical Research Group, Heart Research Institute, Sydney, NSW 2042, Australia."},{"name":"BCardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia."},{"name":"CFaculty of Medicine, The University of Sydney, Sydney, NSW 2050, Australia."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David S.","family":"Celermajer","sequence":"additional","affiliation":[{"name":"AClinical Research Group, Heart Research Institute, Sydney, NSW 2042, Australia."},{"name":"BCardiology Department, Royal Prince Alfred Hospital, Level 6, Building 75, Missenden Road, Camperdown, Sydney, NSW 2050, Australia."},{"name":"CFaculty of Medicine, The University of Sydney, Sydney, NSW 2050, Australia."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"67","published-online":{"date-parts":[[2025,2,11]]},"reference":[{"issue":"1","key":"2025121504405308000_R1","doi-asserted-by":"publisher","first-page":"7","DOI":"10.15386\/cjmed-1015","article-title":"The role of medical registries, potential applications and limitations.","volume":"92","author":"Pop","year":"2019","journal-title":"Med Pharm Rep"},{"issue":"suppl_3","key":"2025121504405308000_R2","doi-asserted-by":"publisher","DOI":"10.1093\/eurpub\/ckv169.006","article-title":"Methodological Guidelines and Recommendations for Efficient and Rationale Governance of Patient Registries: Metka Zalatel.","volume":"25","author":"Zaletel","year":"2015","journal-title":"Eur J Public Health"},{"key":"2025121504405308000_R3"},{"key":"2025121504405308000_R4"},{"issue":"8","key":"2025121504405308000_R5","doi-asserted-by":"publisher","first-page":"750","DOI":"10.1016\/j.hlc.2016.03.018","article-title":"Congenital Heart Disease Requires a Lifetime Continuum of Care: A Call for a Regional Registry.","volume":"25","author":"Celermajer","year":"2016","journal-title":"Heart Lung Circ"},{"key":"2025121504405308000_R6","doi-asserted-by":"publisher","first-page":"410","DOI":"10.1071\/AH23063","article-title":"Obstacles in establishing a national disease registry in Australia: lessons from the development of the CHAANZ Congenital Heart Disease Registry.","volume":"47","author":"Lloyd","year":"2023","journal-title":"Aust Health Rev"},{"issue":"1","key":"2025121504405308000_R7","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1071\/AH23185","article-title":"The burdensome logistics of data linkage in Australia - the example of a national registry for congenital heart disease.","volume":"48","author":"Lloyd","year":"2023","journal-title":"Aust Health Rev"},{"key":"2025121504405308000_R8","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijcchd.2024.100538","article-title":"A National Australian Congenital Heart Disease Registry; Methods and Initial Results.","volume":"17","author":"Nicholson","year":"2024","journal-title":"Int J Cardiol Congenit Heart Dis"},{"key":"2025121504405308000_R9"},{"key":"2025121504405308000_R10"},{"key":"2025121504405308000_R11"},{"key":"2025121504405308000_R12"},{"key":"2025121504405308000_R13"},{"key":"2025121504405308000_R14"},{"key":"2025121504405308000_R15"},{"key":"2025121504405308000_R16"},{"key":"2025121504405308000_R17"},{"key":"2025121504405308000_R18"},{"key":"2025121504405308000_R19"}],"container-title":["Australian Health Review"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/connectsci.au\/ah\/article-pdf\/doi\/10.1071\/AH24338\/1636978\/ah24338.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/connectsci.au\/ah\/article-pdf\/doi\/10.1071\/AH24338\/1636978\/ah24338.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,15]],"date-time":"2025-12-15T09:40:58Z","timestamp":1765791658000},"score":1,"resource":{"primary":{"URL":"https:\/\/connectsci.au\/ah\/article\/49\/2\/AH24338\/238004\/State-and-territory-based-differences-that-impede"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,2,11]]},"references-count":19,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2025,4,3]]}},"URL":"https:\/\/doi.org\/10.1071\/ah24338","relation":{},"ISSN":["0156-5788","1449-8944"],"issn-type":[{"value":"0156-5788","type":"print"},{"value":"1449-8944","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,2,11]]},"article-number":"AH24338"}}