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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

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 an...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8067795/
https://www.ncbi.nlm.nih.gov/pubmed/33917154
http://dx.doi.org/10.3390/children8040285
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author 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
author_facet 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
author_sort Sung, Valerie
collection PubMed
description 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.
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spelling pubmed-80677952021-04-25 Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort 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 Children (Basel) Article 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. MDPI 2021-04-07 /pmc/articles/PMC8067795/ /pubmed/33917154 http://dx.doi.org/10.3390/children8040285 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
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
Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
title Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
title_full Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
title_fullStr Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
title_full_unstemmed Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
title_short Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
title_sort enhancing value and uptake for whole-population cohorts of children and parents: methods to integrate registries into the generation victoria cohort
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8067795/
https://www.ncbi.nlm.nih.gov/pubmed/33917154
http://dx.doi.org/10.3390/children8040285
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