{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,22]],"date-time":"2026-07-22T06:09:13Z","timestamp":1784700553338,"version":"3.55.0"},"reference-count":23,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2008,1,15]],"date-time":"2008-01-15T00:00:00Z","timestamp":1200355200000},"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 C"],"published-print":{"date-parts":[[2008,2,15]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>In the US, all states and the District of Columbia have universal newborn screening (NBS) programs for sickle cell disease (SCD), which also identify sickle cell trait (trait). In this project, we surveyed follow\u2010up coordinators, including one in the District of Columbia and two in Georgia, about protocols for stakeholder notification for SCD and trait. The primary outcomes were total number and type of stakeholder informed of a positive screen. We received 52 completed surveys (100% response). Primary care providers (PCPs) (100%), hematologists (81%), hospitals (73%), and families (40%) were the most commonly notified stakeholders of positive SCD screens, while PCPs (88%), hospitals (63%), and families (37%) were most commonly notified for trait. On average, 3.4 stakeholders were notified for a positive screening for SCD, compared to 2.4 stakeholders for sickle cell trait (<jats:italic>P<\/jats:italic>\u2009&lt;\u20090.001). In multivariate analyses for SCD, we found a 2.9% increase in stakeholders notified for each additional year of universal screening mandated in a state (95% CI: 1.4\u20134.4%). For trait, we found an 8.5% increase in stakeholders notified for each additional follow\u2010up staff (95% CI: 1.3\u201315.7%), and a 1.3% increase for each additional percent of black births in the state (95% CI: 0.1\u20132.5%). Wide variation exists in stakeholder notification by NBS programs of positive screenings for SCD and trait. This variation may alter the effectiveness of NBS programs by location of birth. \u00a9 2008 Wiley\u2010Liss, Inc.<\/jats:p>","DOI":"10.1002\/ajmg.c.30160","type":"journal-article","created":{"date-parts":[[2008,1,16]],"date-time":"2008-01-16T19:46:46Z","timestamp":1200512806000},"page":"15-22","source":"Crossref","is-referenced-by-count":64,"title":["Communication of positive newborn screening results for sickle cell disease and sickle cell trait: Variation across states"],"prefix":"10.1002","volume":"148C","author":[{"given":"Patricia L.","family":"Kavanagh","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C. Jason","family":"Wang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bradford L.","family":"Therrell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philippa G.","family":"Sprinz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Howard","family":"Bauchner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2008,1,15]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1081\/HEM-120015024"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpedi.155.2.120"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/milmed\/164.3.230"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM198606193142501"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM198709243171301"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2006-1782"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2006-1639"},{"key":"e_1_2_7_9_1","first-page":"1472","article-title":"Sickle cell trait and sudden death in athletes","volume":"276","author":"Kerle KK","year":"1996","journal-title":"JAMA"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ki.5002060"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.313.7054.407"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.7020.1600"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.267.8.1095"},{"key":"e_1_2_7_14_1","volume-title":"Final data for 2004.National vital statistics reports","author":"Martin JR","year":"2006"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.258.9.1205"},{"key":"e_1_2_7_16_1","unstructured":"National Newborn Screening and Genetics Resource Center.2001.National newborn screening report\u20142001. Austin TX: Available athttp:\/\/www2.uthscsa.edu\/nnsis. Accessed May 18 2007."},{"key":"e_1_2_7_17_1","unstructured":"National Newborn Screening and Genetics Resource Center.2007.National newborn screening report\u20142007. Austin TX: Available athttp:\/\/www2.uthscsa.edu\/nnsis. Accessed May 18 2007."},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD003859.pub2"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpedi.154.9.873"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1097\/00043426-199602000-00007"},{"key":"e_1_2_7_21_1","first-page":"377","article-title":"Splenic syndrome in patients at high altitude with unrecognized sickle cell trait: Splenectomy is often unnecessary","volume":"48","author":"Sheikha A","year":"2005","journal-title":"Can J Surg"},{"key":"e_1_2_7_22_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpedi.1997.02170430027005"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/mrdd.20124"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-2633C"}],"container-title":["American Journal of Medical Genetics Part C: Seminars in Medical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fajmg.c.30160","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.30160","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,12]],"date-time":"2023-09-12T11:45:22Z","timestamp":1694519122000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.c.30160"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2008,1,15]]},"references-count":23,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2008,2,15]]}},"alternative-id":["10.1002\/ajmg.c.30160"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.c.30160","archive":["Portico"],"relation":{},"ISSN":["1552-4868","1552-4876"],"issn-type":[{"value":"1552-4868","type":"print"},{"value":"1552-4876","type":"electronic"}],"subject":[],"published":{"date-parts":[[2008,1,15]]}}}