{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T20:49:30Z","timestamp":1791924570055,"version":"4.3.4"},"reference-count":24,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"8","content-domain":{"domain":["www.ahajournals.org"],"crossmark-restriction":true},"short-container-title":["JAHA"],"published-print":{"date-parts":[[2016,8,8]]},"abstract":"\n Background<\/jats:title>\n \n The long\u2010term outcomes of patients undergoing interventions for congenital heart disease (\n CHD<\/jats:styled-content>\n ) remain largely unknown. We linked the Pediatric Cardiac Care Consortium (\n PCCC<\/jats:styled-content>\n ) with the National Death Index (\n NDI<\/jats:styled-content>\n ) and the United Network for Organ Sharing Dataset (\n UNOS<\/jats:styled-content>\n ) registries to study mortality and transplant occurring up to 32\u00a0years postintervention. The objective of the current analysis was to determine the sensitivity of this linkage in identifying patients who are known to have died or undergone heart transplant.\n <\/jats:p>\n <\/jats:sec>\n \n Methods and Results<\/jats:title>\n \n We used direct identifiers from 59\u00a0324 subjects registered in the\n PCCC<\/jats:styled-content>\n between 1982 and 2003 to test for completeness of case ascertainment of subjects with known vital and heart transplant status by linkage with the\n NDI<\/jats:styled-content>\n and\n UNOS<\/jats:styled-content>\n registries. Of the 4612 in\u2010hospital deaths, 3873 were identified by the\n NDI<\/jats:styled-content>\n as \u201ctrue\u201d matches for a sensitivity of 84.0% (95%\n CI,<\/jats:styled-content>\n 82.9\u201385.0). There was no difference in sensitivity across 25 congenital cardiovascular conditions after adjustment for age, sex, race, presence of first name, death year, and residence at death. Of 455 known heart transplants in the\n PCCC<\/jats:styled-content>\n , there were 408 matches in the\n UNOS<\/jats:styled-content>\n registry, for a sensitivity of 89.7% (95%\n CI<\/jats:styled-content>\n , 86.9\u201392.3). An additional 4851 deaths and 363 transplants that occurred outside the\n PCCC<\/jats:styled-content>\n were identified through 2014.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n \n The linkage of the\n PCCC<\/jats:styled-content>\n with the\n NDI<\/jats:styled-content>\n and\n UNOS<\/jats:styled-content>\n national registries is feasible with a satisfactory sensitivity. This linkage provides a conservative estimate of the long\u2010term death and heart transplant events in this cohort.\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1161\/jaha.116.003783","type":"journal-article","created":{"date-parts":[[2016,8,10]],"date-time":"2016-08-10T01:33:57Z","timestamp":1470792837000},"update-policy":"https:\/\/doi.org\/10.1161\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":34,"title":["In\u2010Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets"],"prefix":"10.1161","volume":"5","author":[{"given":"Logan G.","family":"Spector","sequence":"first","affiliation":[{"name":"Department of Pediatrics, University of Minnesota, Minneapolis, MN"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeremiah S.","family":"Menk","sequence":"additional","affiliation":[{"name":"Biostatistical Design and Analysis Center, University of Minnesota, Minneapolis, MN"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey M.","family":"Vinocur","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Rochester, NY"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthew E.","family":"Oster","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Emory University School of Medicine and Children's Health Care of Atlanta, GA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian A.","family":"Harvey","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Minnesota, Minneapolis, MN"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James D.","family":"St. Louis","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, University of Missouri\u2010Kansas School of Medicine, Kansas City, MO"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James","family":"Moller","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Minnesota, Minneapolis, MN"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lazaros K.","family":"Kochilas","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Emory University School of Medicine and Children's Health Care of Atlanta, GA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1092-9126(98)70018-3"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCOUTCOMES.111.963603"},{"key":"e_1_3_4_4_2","first-page":"323","article-title":"Medium and long\u2010term outcomes of Fontan operation","volume":"94","author":"Chungsomprasong P","year":"2011","unstructured":"Chungsomprasong P, Soongswang J, Nana A, Durongpisitkul K, Loahaprasitiporn D, Vijansorn C, Sriyodchartti S. Medium and long\u2010term outcomes of Fontan operation. J Med Assoc Thai. 2011;94:323\u2013330.","journal-title":"J Med Assoc Thai"},{"key":"e_1_3_4_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtcvs.2010.10.024"},{"key":"e_1_3_4_6_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2012.03.019"},{"key":"e_1_3_4_7_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0735-1097(00)00682-3"},{"key":"e_1_3_4_8_2","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.107.738559"},{"key":"e_1_3_4_9_2","doi-asserted-by":"publisher","DOI":"10.1136\/hrt.2002.007138"},{"key":"e_1_3_4_10_2","doi-asserted-by":"publisher","DOI":"10.1161\/hc3101.093968"},{"key":"e_1_3_4_11_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2007.05.040"},{"key":"e_1_3_4_12_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0002-9149(00)01169-3"},{"key":"e_1_3_4_13_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2015.07.065"},{"key":"e_1_3_4_14_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjcard.2004.01.041"},{"key":"e_1_3_4_15_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2012.03.058"},{"key":"e_1_3_4_16_2","doi-asserted-by":"publisher","DOI":"10.1055\/s-2000-6901"},{"key":"e_1_3_4_17_2","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.113.000256"},{"key":"e_1_3_4_18_2","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.115.019506"},{"key":"e_1_3_4_19_2","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCOUTCOMES.111.964841"},{"key":"e_1_3_4_20_2","doi-asserted-by":"publisher","DOI":"10.1016\/S1047-2797(01)00285-X"},{"key":"e_1_3_4_21_2","doi-asserted-by":"publisher","DOI":"10.1111\/ajt.12777"},{"key":"e_1_3_4_22_2","unstructured":"National Center for Health Statistics . National Death Index user's guide. 2013."},{"key":"e_1_3_4_23_2","doi-asserted-by":"publisher","DOI":"10.1080\/01621459.1969.10501049"},{"key":"e_1_3_4_24_2","doi-asserted-by":"publisher","DOI":"10.1186\/1742-5573-4-5"},{"key":"e_1_3_4_25_2","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.82.8.1145"}],"container-title":["Journal of the American Heart Association"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ahajournals.org\/doi\/full\/10.1161\/JAHA.116.003783","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,13]],"date-time":"2024-05-13T10:19:58Z","timestamp":1715595598000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ahajournals.org\/doi\/10.1161\/JAHA.116.003783"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,8,8]]},"references-count":24,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2016,8,8]]}},"alternative-id":["10.1161\/JAHA.116.003783"],"URL":"https:\/\/doi.org\/10.1161\/jaha.116.003783","relation":{},"ISSN":["2047-9980"],"issn-type":[{"value":"2047-9980","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,8,8]]},"assertion":[{"value":"2016-05-17","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2016-07-14","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2016-08-09","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e003783"}}