Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
Valerie Sung, Katrina Williams, Ella Perlow, Yanhong J Hu, Susannah Ahern, Joanne M Said, Bill Karanatsios, John L Hopper, John J McNeil, Leo Donnan, Sharon Goldfeld, Melissa Wake
Children | MDPI AG | Published : 2021
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..View full abstract
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Awarded by Royal Children's Hospital Foundation
Awarded by Australian National Health and Medical Research Council
This research was funded by the Paul Ramsay Foundation; the Victorian Government; the Murdoch Children's Research Institute; the Royal Children's Hospital Foundation [2019-1226] and the Australian National Health and Medical Research Council [1125687 to V.S., 1160906 to M.W., 1155290 to S.G., 1173690 to J.M., 1137349 to J.M.]. V.S. is also supported by a Melbourne Children's Campus Clinician-Scientist Fellowship. Research at the Murdoch Children's Research Institute is supported by the Victorian Government's Operational Infrastructure Support Program.