{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,22]],"date-time":"2026-08-22T21:05:09Z","timestamp":1787432709068,"version":"build-2736575974"},"reference-count":21,"publisher":"Wiley","license":[{"start":{"date-parts":[[2024,2,22]],"date-time":"2024-02-22T00:00:00Z","timestamp":1708560000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"COUPERIN CY23"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["International Journal of Pediatrics"],"published-print":{"date-parts":[[2024,2,22]]},"abstract":"<jats:p>The primary purpose of newborn screening for sickle cell disease is to diagnose the disease before the appearance of symptoms and to initiate early treatment. To answer the question \u201cWhat genetic information needs to be communicated to parents when newborn screening reveals the presence of a sickle cell trait,\u201d we conducted a survey using a self-administered online questionnaire. We received responses from 122 healthcare workers and members of sickle cell disease associations, in France and French overseas departments. Our results showed similar positions on this issue. The information conveyed is not consistent and is the result of grassroots initiatives. The negative consequences generated by this information could be reduced when this information is delivered by a multidisciplinary team, within the framework of a dedicated consultation. This information on sickle cell trait status should be given in at least three key periods: the neonatal period, early adolescence, and later adolescence, when reproductive implications become important. Neonatal screening programs should develop systems that allow referring physicians to easily access the results of neonatal screening electronically. Harmonization of practices should allow a better analysis of the consequences of this counselling on family projects.<\/jats:p>","DOI":"10.1155\/2024\/8910397","type":"journal-article","created":{"date-parts":[[2024,2,22]],"date-time":"2024-02-22T16:05:42Z","timestamp":1708617942000},"page":"1-7","source":"Crossref","is-referenced-by-count":2,"title":["Genetic Information to Share with Parents when Newborn Screening Reveals the Presence of Sickle Cell Trait"],"prefix":"10.1155","volume":"2024","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0624-4180","authenticated-orcid":true,"given":"Narcisse","family":"Elenga","sequence":"first","affiliation":[{"name":"Pediatric Medicine and Surgery, H\u00f4pital Andr\u00e9e Rosemon, Rue des flamboyants, BP 6006, 97306 Cayenne Cedex, French Guiana"},{"name":"Sickle Cell Reference Center, Pediatric Medicine and Surgery, Centre Hospitalier de Cayenne \u201cAndr\u00e9e Rosemon\u201d Rue de Flamboyants, BP 6006, 97306 Cayenne Cedex, French Guiana"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","reference":[{"key":"1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.1910.00050330050003"},{"key":"2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(12)61229-X"},{"issue":"1","key":"3","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1001\/jama.2022.10233","article-title":"sickle cell disease: a review","volume":"328","author":"P. 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Le cas de la dr\u00e9panocytose. Rapport de recherche 2010-2012","author":"A. Lain\u00e9","year":"2013"},{"key":"12","volume-title":"Avis scientifique sur le d\u00e9pistage n\u00e9onatal de l'an\u00e9mie falciforme: \u00e9tat des connaissances et enjeux pour le Qu\u00e9bec","author":"Institut national de sant\u00e9 publique du Qu\u00e9bec","year":"2010"},{"key":"13","doi-asserted-by":"publisher","DOI":"10.1177\/0004563217713788"},{"key":"14","doi-asserted-by":"publisher","DOI":"10.1016\/S1473-3099(12)70055-5"},{"key":"15","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e31821435f7"},{"key":"16","doi-asserted-by":"publisher","DOI":"10.1016\/j.arcped.2015.02.020"},{"issue":"5","key":"17","first-page":"704","article-title":"Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle cell trait","volume":"98","author":"M. J. 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