{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T17:17:53Z","timestamp":1787505473003,"version":"build-2736575974"},"reference-count":23,"publisher":"Cambridge University Press (CUP)","issue":"7","license":[{"start":{"date-parts":[[2019,6,17]],"date-time":"2019-06-17T00:00:00Z","timestamp":1560729600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2019,7]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec id=\"S1047951119001148_as1\">\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Using existing data from clinical registries to support clinical trials and other prospective studies has the potential to improve research efficiency. However, little has been reported about staff experiences and lessons learned from implementation of this method in pediatric cardiology.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951119001148_as2\">\n                    <jats:title>Objectives:<\/jats:title>\n                    <jats:p>We describe the process of using existing registry data in the Pediatric Heart Network Residual Lesion Score Study, report stakeholders\u2019 perspectives, and provide recommendations to guide future studies using this methodology.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951119001148_as3\">\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>The Residual Lesion Score Study, a 17-site prospective, observational study, piloted the use of existing local surgical registry data (collected for submission to the Society of Thoracic Surgeons-Congenital Heart Surgery Database) to supplement manual data collection. A survey regarding processes and perceptions was administered to study site and data coordinating center staff.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951119001148_as4\">\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Survey response rate was 98% (54\/55). Overall, 57% perceived that using registry data saved research staff time in the current study, and 74% perceived that it would save time in future studies; 55% noted significant upfront time in developing a methodology for extracting registry data. Survey recommendations included simplifying data extraction processes and tailoring to the needs of the study, understanding registry characteristics to maximise data quality and security, and involving all stakeholders in design and implementation processes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951119001148_as5\">\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Use of existing registry data was perceived to save time and promote efficiency. Consideration must be given to the upfront investment of time and resources needed. Ongoing efforts focussed on automating and centralising data management may aid in further optimising this methodology for future studies.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1017\/s1047951119001148","type":"journal-article","created":{"date-parts":[[2019,6,17]],"date-time":"2019-06-17T06:13:37Z","timestamp":1560752017000},"page":"930-938","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":7,"title":["Lessons learned in the use of clinical registry data in a multi-centre prospective study: the Pediatric Heart Network Residual Lesion Score Study"],"prefix":"10.1017","volume":"29","author":[{"given":"Carol J.","family":"Prospero","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Felicia L.","family":"Trachtenberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Victoria L.","family":"Pemberton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sara K.","family":"Pasquali","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brett R.","family":"Anderson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen E.","family":"Ash","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Bainton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn","family":"Dunbar-Masterson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eric M.","family":"Graham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle S.","family":"Hamstra","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danielle","family":"Hollenbeck-Pringle","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey P.","family":"Jacobs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marshall L.","family":"Jacobs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rija","family":"John","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda M.","family":"Lambert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthew E.","family":"Oster","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Swan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abigail","family":"Waldron","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meena","family":"Nathan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"for the Pediatric Heart Network Investigators","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2019,6,17]]},"reference":[{"key":"S1047951119001148_ref1","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.115.019506"},{"key":"S1047951119001148_ref14","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2016.06.111"},{"key":"S1047951119001148_ref20","unstructured":"20. 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Riehle-Colarusso, TJ , Bergersen, L , Broberg, CS , et al. Databases for congenital heart defect public health studies across the lifespan. J Am Heart Assoc 2016; 5."},{"key":"S1047951119001148_ref6","doi-asserted-by":"publisher","DOI":"10.1136\/heartjnl-2017-311191"},{"key":"S1047951119001148_ref15","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951108002862"},{"key":"S1047951119001148_ref2","doi-asserted-by":"publisher","DOI":"10.1038\/nrcardio.2015.33"},{"key":"S1047951119001148_ref8","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2017.07.001"},{"key":"S1047951119001148_ref7","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1310102"},{"key":"S1047951119001148_ref3","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2016.07.781"},{"key":"S1047951119001148_ref22","doi-asserted-by":"publisher","DOI":"10.1016\/j.ahj.2010.08.040"},{"key":"S1047951119001148_ref17","unstructured":"17. The Society for Thoracic Surgeons. STS Congenital Heart Surgery Database Data Specifications Version 3.22. 2013; https:\/\/www.sts.org\/sites\/default\/files\/documents\/CongenitalDataSpecsV3_22.pdf Accessed 18 June, 2018."},{"key":"S1047951119001148_ref16","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951108003028"},{"key":"S1047951119001148_ref19","doi-asserted-by":"publisher","DOI":"10.1016\/j.ahj.2013.06.013"},{"key":"S1047951119001148_ref12","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcin.2014.04.007"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951119001148","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,8,18]],"date-time":"2021-08-18T11:15:28Z","timestamp":1629285328000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951119001148\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,6,17]]},"references-count":23,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2019,7]]}},"alternative-id":["S1047951119001148"],"URL":"https:\/\/doi.org\/10.1017\/s1047951119001148","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"value":"1047-9511","type":"print"},{"value":"1467-1107","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,6,17]]},"assertion":[{"value":"\u00a9 Cambridge University Press 2019\u00a0","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}}]}}