{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T05:35:27Z","timestamp":1775021727863,"version":"3.50.1"},"reference-count":24,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,5,6]],"date-time":"2025-05-06T00:00:00Z","timestamp":1746489600000},"content-version":"vor","delay-in-days":5,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2025,5,1]],"date-time":"2025-05-01T00:00:00Z","timestamp":1746057600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>There have been significant improvements in the health of infants and children with cystic fibrosis (CF) since universal newborn screening (NBS) was implemented in the United States (US). However, a significant proportion of infants with CF are not evaluated in a timely manner, and delays disproportionately affect children from minoritized racial\/ethnic groups. The aim of this study was to understand experiences of NBS in caregivers of young children with CF in the United States.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We recruited caregivers of children (0\u221213 years) with CF through listservs and social media of CF organizations. The survey was administered online in 2023 and included questions about their recollections of their child's NBS and the process of getting a CF diagnosis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of 383 caregiver respondents, 43% reported being informed that their child's race or ethnicity was a predictor of the chances of their child having CF. Most reported that after they were notified of a positive NBS test, the initial evaluation for CF was scheduled\u2009\u2265\u20094 days later, 45% reported a delay of \u2265\u20098 days, and 5% reporting a delay of \u2265\u200915 days. Most (91%) felt the initial evaluation for CF was thorough, but 35% reported delays in getting information about their child's diagnosis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Caregivers report delays in evaluation after a positive NBS. A significant proportion reported delays in receiving information about their child's diagnosis or being told that race or ethnicity were related to risk of CF. These findings show the need for education and practice changes in both primary care and CF center settings.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ppul.71110","type":"journal-article","created":{"date-parts":[[2025,5,6]],"date-time":"2025-05-06T07:51:52Z","timestamp":1746517912000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["The Newborn Screening Experience of Caregivers of Children With Cystic Fibrosis in the United States: A Cross\u2010Sectional Survey"],"prefix":"10.1002","volume":"60","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4852-6963","authenticated-orcid":false,"given":"Marie E.","family":"Heffernan","sequence":"first","affiliation":[{"name":"Department of Pediatrics, Ann &amp; Robert H. Lurie Children's Hospital of Chicago Northwestern University Feinberg School of Medicine Chicago Illinois USA"},{"name":"Mary Ann &amp; J. Milburn Smith Child Health Outcomes, Research, and Evaluation Center, Stanley Manne Children's Research Institute, Ann &amp; Robert H. Lurie Children's Hospital of Chicago Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Leo","family":"Barrera","sequence":"additional","affiliation":[{"name":"Mary Ann &amp; J. Milburn Smith Child Health Outcomes, Research, and Evaluation Center, Stanley Manne Children's Research Institute, Ann &amp; Robert H. Lurie Children's Hospital of Chicago Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"MicKayla","family":"Jones","sequence":"additional","affiliation":[{"name":"Mary Ann &amp; J. Milburn Smith Child Health Outcomes, Research, and Evaluation Center, Stanley Manne Children's Research Institute, Ann &amp; Robert H. Lurie Children's Hospital of Chicago Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ashley","family":"Hayes","sequence":"additional","affiliation":[{"name":"Mary Ann &amp; J. Milburn Smith Child Health Outcomes, Research, and Evaluation Center, Stanley Manne Children's Research Institute, Ann &amp; Robert H. Lurie Children's Hospital of Chicago Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marisol","family":"Roldan","sequence":"additional","affiliation":[{"name":"Department of Pediatrics (Pulmonary and Sleep Medicine), Ann &amp; Robert H. Lurie Children's Hospital of Chicago Northwestern University Feinberg School of Medicine Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9162-2678","authenticated-orcid":false,"given":"Michele","family":"Wright","sequence":"additional","affiliation":[{"name":"National Organization of African Americans with Cystic Fibrosis Little Rock Arkansas USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8562-7018","authenticated-orcid":false,"given":"Meghan E.","family":"McGarry","sequence":"additional","affiliation":[{"name":"University of Washington School of Medicine Seattle Washington USA"},{"name":"Seattle Children's Research Institute Seattle Washington USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7395-3000","authenticated-orcid":false,"given":"Lainie F.","family":"Ross","sequence":"additional","affiliation":[{"name":"Department of Health Humanities and Bioethics University of Rochester School of Medicine and Dentistry Rochester New York USA"},{"name":"Paul M Schyve MD Center for Bioethics University of Rochester School of Medicine and Dentistry Rochester New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0842-728X","authenticated-orcid":false,"given":"Susanna A.","family":"McColley","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Ann &amp; Robert H. 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