{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,20]],"date-time":"2026-03-20T05:27:55Z","timestamp":1773984475970,"version":"3.50.1"},"reference-count":38,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2011,10,11]],"date-time":"2011-10-11T00:00:00Z","timestamp":1318291200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2011,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The purpose of the study is to provide data about long\u2010term survivors with full trisomy 13 (t13). Mothers of 30 long\u2010term survivors with full t13 completed an online survey. Survey data were downloaded into an SPSS database. Descriptive statistics were used to analyze survey data. Tracking Rare Incidence Syndrome (TRIS) Survey data on survival, birth information including maternal and paternal age at conception, physical characteristics, and medical conditions were compared. Data indicate longer mean survival rates (48.4 months for those living at the time of data collection, 40.8 months for those who died prior) than described in the literature. Means for gestations age, birth weight, and length are 38.11 weeks, 2,789.34\u2009g and 48.45\u2009cm, respectively. Long\u2010term survivors presented with syndrome\u2010related physical characteristics (e.g., low\u2010set ears, cleft lip and palate) and medical conditions (e.g., ventricular septal defect (VSD), feeding difficulties). We conclude that data indicate longer survival and a range in birth information (gestational age, birth weight, and length) along with presence of common presenting physical characteristics and medical conditions of long\u2010term survivors with full t13. \u00a9 2011 Wiley Periodicals, Inc.<\/jats:p>","DOI":"10.1002\/ajmg.a.34283","type":"journal-article","created":{"date-parts":[[2011,10,11]],"date-time":"2011-10-11T20:50:30Z","timestamp":1318366230000},"page":"2634-2640","source":"Crossref","is-referenced-by-count":27,"title":["Birth history, physical characteristics, and medical conditions in long\u2010term survivors with full trisomy 13"],"prefix":"10.1002","volume":"155","author":[{"given":"Deborah","family":"Bruns","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2011,10,11]]},"reference":[{"key":"e_1_2_6_2_1","first-page":"595","article-title":"A well\u2010documented trisomy 13 case 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