{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T03:00:14Z","timestamp":1771470014321,"version":"3.50.1"},"reference-count":15,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2024,7,8]],"date-time":"2024-07-08T00:00:00Z","timestamp":1720396800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2024,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Neonatal screening for sickle cell disease (SCD) in France, targeted since 1995, indirectly detects newborns with sickle cell trait (SCT). Information about carrier status must be communicated to families in accordance with the 2006 National Consultative Ethics Committee recommendations; however, no national protocol for this exists. In the departments of Nord and Pas\u2010de\u2010Calais, the Regional Neonatal Screening Center transmits this information through a general practitioner (GP). This study aimed to assess the success rate of local practices in transmitting SCT information to parents. The secondary objectives included explaining transmission failures, evaluating post\u2010information couple screening rates, and conducting a nationwide evaluation of SCT information dissemination. In this retrospective, multicenter study, family doctors were surveyed regarding newborns screened for SCT between January 1 and December 31, 2020, in the Nord and Pas\u2010de\u2010Calais departments. Among the 260 screened newborns, 197 were eligible for analysis. Results showed that 31.2% of newborns with SCT had their GP definitively sharing information with their parents. Based on this information, subsequent parental screening accounted for 13.6% of cases. The reasons cited by the GP for failing to convey information included elusive families (52.5%), unfamiliarity or refusal of the role (35%), limited SCD knowledge (25%), and ethical considerations (12.5%). This study highlights the difficulty and heterogeneity in transmitting carrier status information to parents of newborns with SCT. Our findings could serve as a foundation for the development of new methods for information transmission, given the generalization of neonatal screening for SCD by the French National Authority for Health.<\/jats:p>","DOI":"10.1002\/pbc.31174","type":"journal-article","created":{"date-parts":[[2024,7,9]],"date-time":"2024-07-09T05:39:20Z","timestamp":1720503560000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Informing parents of newborns with sickle cell trait detected at neonatal screening: A northern France experience"],"prefix":"10.1002","volume":"71","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-6743-942X","authenticated-orcid":false,"given":"Malo","family":"Freppel","sequence":"first","affiliation":[{"name":"Lille University Hospital (CHU Lille)  Lille France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karine","family":"Mention","sequence":"additional","affiliation":[{"name":"Regional Neonatal Screening Center (CRDN Hauts\u2010de\u2010France) Lille University Hospital (CHU Lille)  Lille France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gilles","family":"Renom","sequence":"additional","affiliation":[{"name":"Perinatal Screening Laboratory, Center for Biology and Pathology Lille University Hospital (CHU Lille)  Lille France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne","family":"Lambilliotte","sequence":"additional","affiliation":[{"name":"Lille University Hospital (CHU Lille)  Lille France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M\u00e9lissa","family":"Barbati","sequence":"additional","affiliation":[{"name":"Lille University Hospital (CHU Lille)  Lille France"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2024,7,8]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1051\/medsci\/2021056"},{"issue":"8","key":"e_1_2_9_3_1","first-page":"142","article-title":"Sickle cell disease mortality in France: age of death and associated causes 51979\u20102010","author":"Gome E","year":"2015","journal-title":"Bull Epid\u00e9miol Hebd"},{"key":"e_1_2_9_4_1","unstructured":"National Neonatal Screening Center.Progress report on the national newborn screening program.National Neonatal Screening Center;2020. Accessed December 4 2023.https:\/\/depistage\u2010neonatal.fr\/wp\u2010content\/uploads\/2021\/12\/Rapport\u2010Activite\u20102020.pdf"},{"key":"e_1_2_9_5_1","unstructured":"National Consultative Ethics Committee in France.Opinion no. 97. Ethical issues raised by the communication of neonatal genetic information during screening for genetic diseases (examples of cystic fibrosis and sickle cell anemia).National Consultative Ethics Committee in France;2007. Accessed December 4 2023.https:\/\/www.ccne\u2010ethique.fr\/sites\/default\/files\/2021\u201002\/avis097.pdf"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1182\/asheducation-2015.1.160"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjmed.2008.12.020"},{"key":"e_1_2_9_8_1","unstructured":"French National Authority for Health.Neonatal screening for sickle cell disease in France. Relevance of generalization to all newborns. A guidance report.French National Authority for Health;2013."},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.arcped.2015.02.020"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1089\/gtmb.2010.0232"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-7-203"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpedi.155.2.120"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-2633M"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2012.03.018"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/0009922812446011"},{"key":"e_1_2_9_16_1","unstructured":"Law No. 2002\u2013303 of March 4 2002. Article L.1111\u20102 of the French Public Health Code: \u201cEvery person has the right to be informed about their health.\u201dFrench Public Health Code;2002."}],"container-title":["Pediatric Blood &amp; Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/pbc.31174","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,1,18]],"date-time":"2025-01-18T05:40:53Z","timestamp":1737178853000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/pbc.31174"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,7,8]]},"references-count":15,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2024,10]]}},"alternative-id":["10.1002\/pbc.31174"],"URL":"https:\/\/doi.org\/10.1002\/pbc.31174","archive":["Portico"],"relation":{},"ISSN":["1545-5009","1545-5017"],"issn-type":[{"value":"1545-5009","type":"print"},{"value":"1545-5017","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,7,8]]},"assertion":[{"value":"2024-03-10","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-06-17","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-07-08","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e31174"}}