The Newborn Screening Experience of Caregivers of Children With Cystic Fibrosis in the United States: A Cross‐Sectional Survey
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.
Authors
- Marie E. Heffernan (ORCID: https://orcid.org/0000-0002-4852-6963)
- Lainie Friedman Ross (ORCID: https://orcid.org/0000-0002-7395-3000)
- Susanna A. McColley (ORCID: https://orcid.org/0000-0003-0842-728X)
- Meghan E. McGarry (ORCID: https://orcid.org/0000-0002-8562-7018)
- Leo Barrera
- Terry Wright (ORCID: https://orcid.org/0000-0002-9162-2678)
- Mickayla Jones
- M.A Segura Roldán
- Ashley Hayes
Institutions
- Northwestern University (US)
- Lurie Children's Hospital (US)
- Organization of American States (US)
- University of Washington (US)
- University of Rochester (US)
Publication Details
- Journal
- Pediatric Pulmonology
- Published
- 2025-05-01
- DOI
- https://doi.org/10.1002/ppul.71110
- Citations
- 1
- Primary Topic
- Cystic Fibrosis Research Advances
- Type
- article
- Field-Weighted Citation Impact
- 1.52