Via Genetic Epidemiology Research Alliance (GERA) investigators.
GERA’s investigator team lead or have access to a number of valuable datasets and cohorts that can be utilised to enable and support genetic epidemiology research. Browse these resources below (click to read more).
Data resources led by GERA investigators
Australian Breakthrough Cancer (ABC) Study. A longitudinal cohort study of 50,000+ participants that investigates the causes of common non-communicable diseases, particularly cancer
About: The study recruited over 50,000 Australians and collected their baseline questionnaire data on family history, health and lifestyle and diet, and biospecimens during 2014-2018. The participants are followed up every 3 years.
GERA contact: CIs Melissa Southey and Shuai Li
More Information: https://www.bcfamilyregistry.org/
Australian Mammographic Density Twins and Sisters Study. 4,300+ female twins and their sisters from 1,700+ families that primarily investigates breast cancer and its mammogram-based risk factors
About: The study recruited over 4,300 female twins and their sisters aged 30-80 years during 2004-2009. Questionnaire data on family history, health and lifestyle and diet, mammogram images, blood samples, genomic and epigenomic data have been collected.
GERA contact: CIs Shuai Li
More Information: PMID: 20145138; PMID: 26527295
Brazilian data-linkage twin cohort. Linked birth and death records of all twins born in Brazil between 2012-2016
About: This cohort includes linked birth and death records of a total of 303,379 twins, being 202,764 of those probabilistically matched in 101,382 pairs. Data includes birth characteristics such as birthweight, gestational age, Apgar scores, as well as causes of death using ICD codes.
GERA contact: CI Lucas Calais-Ferreira
More Information: https://academic.oup.com/ije/article/51/5/1502/6446132
Breast Cancer Family Registry (BCFR) Cohort. ~40,000 people from ~15,000 families across the full spectrum of familial risk and/or genetic predisposition of breast cancer
About: An NIH-funded international consortium of six sites in Australia, Canada and the US. The cohort was established in 1995 and conducts regular follow-ups. Epidemiology, family history, biospecimens, mutation and genomic data have been collected.
GERA contact: CIs Melissa Southey and Shuai Li
More Information: https://www.bcfamilyregistry.org/
Colon Cancer Family Registry (CCFR) Cohort. ~43,000 people from ~15,000 colon cancer families
About: TBC
GERA contact: AI Mark Jenkins
More Information: https://coloncfr.org
International Twins and Breast Cancer Study. Study of 574 twin pairs affected by breast cancer recruited in Australia and the USA. Extensive questionnaire data available
About: This is a collaborative study between Twins Research Australia and Prof Tom Mack and his team at the University of Southern California. This study includes a total of 574 twin pairs affected by breast cancer recruited in Australia and the USA. Extensive questionnaire data was collected between 2017-2021. The 574 pairs include 607 cases in 509 discordant and 65 concordant pairs. Genetic (saliva)/PRS data is available for 347 US twin pairs (392 cases and 302 non-cases), including 69 disease-discordant DZ twin pairs.
GERA contact: CIs Lucas Calais-Ferreira and Shuai Li
More Information: Contact Lucas Calais-Ferreira
Generation Victoria (GenV) is a new addition to the world’s 100k+ early and pre-midlife longitudinal cohorts.
About: Launched in October 2021, GenV has recruited around 125,000 participants (nearly 50,000 children and 75,000 adults) and this number will grow over time within our birth window. GenV is designed both for new discoveries and to test new interventions that can be readily translated into services and policy decisions, leading to better prediction, prevention, treatments and services and greater equity. GenV’s solutions system comprises a consented cohort, linked administrative data, existing ante/perinatal biosamples, GenV-collected data and biosamples, collaborator-led studies and interventional trials, and an Open Science platform.
GERA contact: AI Melissa Wake
More Information: https://www.genv.org.au
Tasmanian Longitudinal Health Study (TAHS). A long-term population-based longitudinal family study of chronic respiratory diseases
About: Started in 1968 as a cohort of almost all 8,583 Tasmanian schoolchildren born in 1961 (probands), their parents (16,267) and siblings at the time (21,044). Participants have been followed up regularly and data on lifestyle factors, body measurements, histories of asthma, hay fever, eczema and respiratory diseases, and lung function measurements collected. Genomic data are also available.
GERA contact: CI Shyamali Dharmage
More Information: https://tahs.com.au/
Melbourne Collaborative Cohort Study (MCCS). A longitudinal cohort study of 40,000+ participants that investigates the causes of common non-communicable diseases
About: The cohort recruited ~41,500 people (~24,500 women and ~17,000 men) aged 40-69 years between 1990 and 1994, and conducts regular follow-ups. About 30% of the cohort are Southern European migrants to Australia who were deliberately over-sampled to extend the range of lifestyle exposures and to increase genetic variation. Epidemiology, family history, health and lifestyle and diet, biospecimens, genomic and epigenomic data have been collected.
GERA contact: CI Melissa Southey and AI Robert MacInnis
More Information: https://www.cancervic.org.au/research/epidemiology/health_2020/health2020-overview
Twin study in Wellbeing using Integrative Neuroscience of Emotion (TWIN-E). A prospective study of ~1,600 twins that primarily investigates mental wellbeing and resilience
About: Over 1,600 monozygotic (64%) and dizygotic (36%) adult twins (average age = 40 years, age range = 18-62 years) were recruited at baseline and followed up at 1 year and 10 years after the baseline, respectively. Wellbeing, resilience, depression, anxiety, stress, cognition, neuroimaging, mental health, personality and coping factors data and genomic data have been collected for the twins at baseline and follow-ups.
GERA contact: CI Justine Gatt
More Information: https://neura.edu.au/project/longitudinal-neural-trajectories-vulnerability-versus-resilience-adult-twins
The Victorian Twin Birth Cohort Study. ~27,000 twins (and their mothers) born from 1993-2010 in the state of Victoria, Australia. Comprehensive health information derived from population-based linked administrative health records
About: Due to their demographic similarity, twins are notoriously difficult to accurately identify in administrative data. In collaboration with Twins Research Australia and the Centre of Victorian Data Linkage, GERA researchers have co-designed and validated a highly accurate algorithm to ascertain twin pairs using population-based state administrative health records. From birth, the cohort has prospectively linked birth, perinatal, emergency department, inpatient hospital, mental health service, alcohol and other drug treatment, and death records. At the end of the study period (31st December 2022), the twins are aged from 14-30 years, providing rich information across the formative developmental years from childhood to young adulthood. This study aims to apply novel twin and family designs and advanced causal inference methods to understand and disentangle the contribution of familial factors – both genetic and shared environmental – and ‘individual’ risk factors (i.e., social/unique environmental) in the onset, course, and co-occurrence of mental illness and substance use disorder.
GERA contact: CI Jesse Young
More Information: https://www.dlsph.utoronto.ca/faculty-profile/young-jesse-t/
Twins Research Australia (TRA) Cohort. Registry of ~38,000 twin pairs approachable for studies. Data are available from a variety of studies from 40+ years of research
About: Twins Research Australia (TRA) based at the University of Melbourne, undertakes and supports twin research across Australia and globally. Primarily TRA supports studies by facilitating twin recruitment, with over 38,000 twin pairs of all ages available to approach Australia wide. Data are available from a variety of studies over 40+ years, including recent TRA lead studies: Health & Lifestyle Questionnaire (HLQ) & Twins Research Australia COVID-19 Knowledge, Experience, Reaction, and Resilience (TRACKERR) study
GERA contact: CI Lucas Calais-Ferreira and manager Jess Tyler
More Information: https://twins.org.au/research/research-with-us/
The Ontario Twin Birth Cohort Study. ~38,000 twins (and their mothers) born from 1993-2010 in the province of Ontario, Canada. Comprehensive health information derived from population-based linked administrative health records
About: From birth, the cohort has prospectively linked birth and maternal hospital, perinatal, demographic/census, emergency department, inpatient hospital, psychiatric inpatient, physician outpatient, drug benefit claim, and death records. At the end of the study period (31st December 2024), the twins are aged from 14-31 years, providing rich information across the formative developmental years from childhood to young adulthood. This study aims to advance our understanding of familial clustering of mental disorders and examine the extent to which sex differences determine the onset, course, and co-occurrence of mental illness and substance use disorder.
GERA contact: CI Jesse Young
More Information: https://www.dlsph.utoronto.ca/faculty-profile/young-jesse-t/
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