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Open AccessArticle

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

1
Murdoch Children’s Research Institute, Melbourne 3052, Australia
2
Department of Paediatrics, The University of Melbourne, Melbourne 3052, Australia
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The Royal Children’s Hospital, Melbourne 3052, Australia
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Department of Paediatrics, Monash University, Melbourne 3168, Australia
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Monash Children’s Hospital, Melbourne 3168, Australia
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Department of Epidemiology and Preventive Medicine, Monash University, Melbourne 3004, Australia
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Department of Obstetrics and Gynecology, The University of Melbourne, Melbourne 3052, Australia
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Maternal Fetal Medicine, Joan Kirner Women’s & Children’s at Sunshine Hospital, Western Health, Melbourne 3021, Australia
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Western Health Chronic Disease Alliance, Western Health, Melbourne 3021, Australia
10
Melbourne School of Population of Global Health, The University of Melbourne, Melbourne 3053, Australia
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Liggins Institute, University of Auckland, Auckland 1023, New Zealand
*
Author to whom correspondence should be addressed.
Academic Editor: Dirk Bassler
Children 2021, 8(4), 285; https://doi.org/10.3390/children8040285
Received: 26 February 2021 / Revised: 19 March 2021 / Accepted: 31 March 2021 / Published: 7 April 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 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. View Full-Text
Keywords: research methodology; registries; registry trials; population studies; GenV (Generation Victoria); children research methodology; registries; registry trials; population studies; GenV (Generation Victoria); children
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MDPI and ACS Style

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 2021, 8, 285. https://doi.org/10.3390/children8040285

AMA Style

Sung V, Williams K, Perlow E, Hu YJ, Ahern S, Said JM, Karanatsios B, Hopper JL, McNeil JJ, 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. 2021; 8(4):285. https://doi.org/10.3390/children8040285

Chicago/Turabian Style

Sung, Valerie; Williams, Katrina; Perlow, Ella; Hu, Yanhong J.; Ahern, Susannah; Said, Joanne M.; Karanatsios, Bill; Hopper, John L.; McNeil, John J.; Donnan, Leo; Goldfeld, Sharon; Wake, Melissa. 2021. "Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort" Children 8, no. 4: 285. https://doi.org/10.3390/children8040285

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