Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents
Methods to Integrate Registries into the Generation Victoria Cohort
Bibliographic Data
| ID | 15715096 |
|---|---|
| Authors | Valerie Sung (0000-0003-2029-6331, Royal Children's Hospital), Katrina Williams (0000-0002-1686-4458, The University of Melbourne), Ella Perlow (0000-0002-7259-1917, Murdoch Children's Research Institute), Yanhong Hu (0000-0002-0923-7923, The University of Melbourne), Susannah Ahern (0000-0001-9413-6897, Monash University), Joanne Said (0000-0001-6263-0030, The University of Melbourne), Bill Karanatsios (0000-0002-0681-5986, Western Health), John L Hopper (0000-0002-8567-173X, The University of Melbourne), John J Mcneil (0000-0002-1049-5129, Monash University), Leo Donnan (0000-0002-2207-9165, Royal Children's Hospital), Sharon Goldfeld (0000-0001-6520-7094, Royal Children's Hospital), Melissa Wake (0000-0001-7501-9257, University of Auckland, corresponding author) |
| Year | 2021 |
| Volume | 8 |
| Issue | 4 |
| Pages | 285-285 |
| Publication date | 2021-04-07 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children8040285 |
| PMID | 33917154 |
| OpenAlex | W3140915416 |
| Language | EN |
| Citations received | 1 |
| References cited | 14 |
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
Benchmarking · Business · Cohort · Cohort study · Environmental health · Family medicine · Political science · Population · Relevance (law · Birth, Development, and Health · demographic modeling and climate adaptation · Demography · Health disparities and outcomes · Medicine
| Unique citing works | 1 |
|---|---|
| Citations per year | 1 |
| Citation span | 2025 - 2025 (1) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 1 |