Cystic Fibrosis Cases Missed by Newborn Bloodspot Screening-Towards a Consistent Definition and Data Acquisition.


Munck, Anne, Southern, Kevin W, Murphy, Jared ORCID: 0000-0003-4656-3004, de Winter-de Groot, Karin M, Gartner, Silvia, Karadag, Bülent, Kashirskaya, Nataliya, Linnane, Barry, Proesmans, Marijke, Sands, Dorota et al (show 4 more authors) (2023) Cystic Fibrosis Cases Missed by Newborn Bloodspot Screening-Towards a Consistent Definition and Data Acquisition. International journal of neonatal screening, 9 (4). p. 65.

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Abstract

Repeated European surveys of newborn bloodspot screening (NBS) have shown varied strategies for collecting missed cases, and information on data collection differs among countries/regions, hampering data comparison. The ECFS Neonatal Screening Working Group defined missed cases by NBS as either false negatives, protocol-related, concerning analytical issues, or non-protocol-related, concerning pre- and post-analytical issues. A questionnaire has been designed and sent to all key workers identified in each NBS programme to assess the feasibility of collecting data on missed cases, the stage of the NBS programme when the system failed, and individual patient data on each missed case.

Item Type: Article
Uncontrolled Keywords: European CF Society Neonatal Screening Working Group (ECFS NSWG)
Divisions: Faculty of Health and Life Sciences
Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences
Depositing User: Symplectic Admin
Date Deposited: 06 Mar 2024 10:34
Last Modified: 06 Mar 2024 10:34
DOI: 10.3390/ijns9040065
Open Access URL: https://doi.org/10.3390/ijns9040065
Related URLs:
URI: https://livrepository.liverpool.ac.uk/id/eprint/3179166
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