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    Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort

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    Author
    Sung, V; Williams, K; Perlow, E; Hu, YJ; Ahern, S; Said, JM; Karanatsios, B; Hopper, JL; McNeil, JJ; Donnan, L; ...
    Source Title
    Children
    Publisher
    MDPI AG
    University of Melbourne Author/s
    Goldfeld, Sharon
    Affiliation
    Collected Works
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    Document Type
    Journal Article
    Citations
    Sung, V., Williams, K., Perlow, E., Hu, Y. J., Ahern, S., Said, J. M., Karanatsios, B., Hopper, J. L., McNeil, J. J., Donnan, L., Goldfeld, S. & Wake, M. Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort. Children, 8 (4), pp.285-285. https://doi.org/10.3390/children8040285.
    Access Status
    This item is currently not available from this repository
    URI
    http://hdl.handle.net/11343/268112
    DOI
    10.3390/children8040285
    Abstract
    <jats:p>Health registries are critical to understanding, benchmarking and improving quality of care for specific diseases and conditions, but face hurdles including funding, bias towards clinical rather than population samples, lack of pre-morbid and outcomes data, and absent cross-registry harmonisation and coordination. Children are particularly under-represented in registry research. This paper lays out novel principles, methods and governance to integrate diverse registries within or alongside a planned children’s mega-cohort to rapidly generate translatable evidence. GenV (Generation Victoria) will approach for recruitment parents of all newborns (estimated 150,000) over two years from mid-2021 in the state of Victoria (population 6.5 million), Australia. Its sample size and population denominator mean it will contain almost all children with uncommon or co-morbid conditions as they emerge over time. By design, it will include linked datasets, biosamples (including from pregnancy), phenotypes and participant-reported measures, all of which will span pre-morbid to long-term outcomes. We provide a vignette of a planned new registry for high-risk pregnancies to illustrate the possibilities. To our knowledge, this is the first paper to describe such a methodology designed prospectively to enhance both the clinical relevance of a large multipurpose cohort and the value and inclusivity of registries in a population.</jats:p>

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