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    Improving case ascertainment of congenital anomalies: findings from a prospective birth cohort with detailed primary care linkage

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    Small_BMJ_Paediatrics_Open.pdf (567.6Kb)
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    Publication date
    2017
    Author
    Bishop, C.
    Small, Neil A.
    Mason, D.
    Corry, P.
    Wright, J.
    Parslow, Roger C.
    Bittles, A.H.
    Sheridan, E.
    Keyword
    Congenital anomalies; Data linkage; Primary care
    Rights
    © Article author(s) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
    Peer-Reviewed
    Yes
    
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    Abstract
    Background Congenital anomalies (CAs) are a common cause of infant death and disability. We linked children from a large birth cohort to a routine primary care database to detect CA diagnoses from birth to age 5 years. There could be evidence of underreporting by CA registries as they estimate that only 2% of CA registrations occur after age 1 year. Methods CA cases were identified by linking children from a prospective birth cohort to primary care records. CAs were classified according to the European Surveillance of CA guidelines. We calculated rates of CAs by using a bodily system group for children aged 0 to <5 years, together with risk ratios (RRs) with 95% CIs for maternal risk factors. Results Routinely collected primary care data increased the ascertainment of children with CAs from 432.9 per 10 000 live births under 1 year to 620.6 per 10 000 live births under 5 years. Consanguinity was a risk factor for Pakistani mothers (multivariable RR 1.87, 95% CI 1.46 to 2.83), and maternal age >34 years was a risk factor for mothers of other ethnicities (multivariable RR 2.19, 95% CI 1.36 to 3.54). Education was associated with a lower risk (multivariable RR 0.78, 95% CI 0.62 to 0.98). Conclusion 98% of UK CA registrations relate to diagnoses made in the first year of life. Our data suggest that this leads to incomplete case ascertainment with a further 30% identified after age 1 year in our study. Risk factors for CAs identified up to age 1 year persist up to 5 years. National registries should consider using routine data linkage to provide more complete case ascertainment after infancy.
    URI
    http://hdl.handle.net/10454/14680
    Version
    Published version
    Citation
    Bishop C, Small N, Mason D et al (2017) Improving case ascertainment of congenital anomalies: findings from a prospective birth cohort with detailed primary care record linkage. BMJ Paediatrics Open. 1(1): e000171.
    Link to publisher’s version
    http://dx.doi.org/10.1136/bmjpo-2017-000171
    Type
    Article
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    Health Studies Publications

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