Generation Victoria Transforming the health and well-being of generations of children.
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Transcript of Generation Victoria Transforming the health and well-being of generations of children.
Generation VictoriaTransforming the health and well-being of generations of children
1. Introduction to Generation Victoria (Gen V)• Context • Sampling frame • Components• Focus
2. Data that will be available • Availability and accessibility of biospecimens
3. Progress - piloting and recruitment strategy4. Research questions relating to childhood cancers that could potentially be explored through the I4C.
Why?
1. Complex conditions 2. Rising incidence3. Interrelated4. Rapidly changing modern environment5. Long term consequences
- Opportunities for prevention/early intervention- Increasing inequality
Obesity & Cardiovascular diseaseAllergy and Autoimmune diseasesInfection and inflammationMental health Neurodevelopment
Australia23 million
Northern Territory 240,000
Western Australia
2.5 million
Queensland 4.6 million
New South Wales 7.4 million
Victoria 5.8
million
Tasmania
500.000
South Australia1.6 million
Australian Capital Territory 380,000
Australian Bureau of Statistics, 2013.
Context: Australia
• Allergy
• Obesity
• Inflammation/infectious diseases
• Mental Health
• Developmental problems
Australia & New Zealand: among the highest prevalence of allergic disorders in the developed world.
- 4.1 million Australians (19.6% of the population) have at
least one allergy - 2.2 million (55%) females
- Highest prevalence of allergies is in the working age population
- with 78% of people with allergies aged 15 to 64 years
Approximately 300,000 young Australians (5-19 years) obese
3.71 million (17.5%)* Australiansestimated to be obese (2008)
Obesity
2025 - 4.6 million Australians (18.3%) projected to be obese.
*14.5% higher than in 2005
- Type 2 diabetes as a result of being obese – 137% increase
- CVD as a result of being obese – 70% increase
- Osteoarthritis as a result of being obese- 88% increase
- Colorectal, breast, uterine or kidney cancer as a result of being obese – 47% increase
Comorbidity 2005-2008
Estimated financial cost (2008) $8.3 billion
Context : Victoria – sampling frame Victoria- 5.8 million - 76,000 live births Demographic diversity- 43.6% either born overseas, or have a
parent born overseas- migrants from over 200 countries.
Population Stability - Overseas emigration rate = 1.05%
(2010-11)- Net interstate migration of +0.07%
(2010-11)
Population Density- Geographically smaller, relatively large
population – higher average population density.
- Feasible to achieve whole of state coverage.
Australian Bureau of Statistics, 2012.
Melbourne Children’s Bio-resource Facility
Co-located and Integrated Clinical, Research, Educational, Diagnostic and Biobanking facility
Campus
Gen V – The Platform for the Campus
1. Recruitment from all live births in Victoria over 2 calendar years (77,000/year)* with longitudinal surveillance of health, development and episodes of care.
2. Collection of biological specimens (light, medium and deep)3. Linkage to State and Federal datasets.4. Establishment of a repository of clinical information on children attending the
RCH with data capture from all admissions (34,700/yr), surgeries (6,600/yr), emergency presentations (73,500/yr), outpatient visits (246,000/yr), and over 200 hospital in the home patients per day.^ This will encompass data linkage of biospecimen and clinical outcome measures.
5. Geographical Information System (GIS) data of geographic (both environmental and spatial epidemiology), place-based, health economic and health services origin.
*Sample size to be determined ^To be developed initially at RCH but expanded in stages to encompass other paediatric hospitals/centres
Questions:In regard to:•Obesity and cardiovascular health•Allergy and autoimmune disease•Infectious disease and inflammation•Mental health •Neurodevelopment
We will ask:How does genetic predisposition and early life (incl. prenatal) interact to shape these disease outcomes?Specifically:
1. What are the genetic and early life vulnerabilities and how are they related?
2. Are some risk factors/predictors amenable to modification? How do these vary in relation to family, socioeconomic circumstances and place?
3. Which genetic, racial and migration factors increase risk?4. What are the costs (in the first 500 and 1000 days) of both quality of life
and health expenditure measures? Which of these are avoidable and attributable to social inequity?
•Which of these factors are common across disease states?
1. Introduction to Generation Victoria (Gen V)• Context • Sampling frame • Components• Focus
2. Data that will be available • Availability and accessibility of biospecimens
3. Progress - piloting and recruitment strategy4. Research questions relating to childhood cancers that could potentially be explored through the I4C.
Participant Journey
Ultrasounds
Maternal S
erum S
creening
Birth
Neonatal hearing screening
1 year
Guthrie cards
5 yearsS
chool entry health Q
AE
DI
NA
PLA
N
English on line
Child development,health and well being
MCH surveillanceImmunisation schedule2 & 3 year health checks
Health & Education encounters RCH Clinical Repository
Gen V Light
Co
rd B
loo
d, C
ord
& P
lacental T
issue
Dem
ographics + Q
uestio
nn
aire
Ch
ild &
Paren
t DN
A
Gen V Minimal
Gen V Deep
4/5 child
health
check
Geographical Information System(GIS)
1. Introduction to Generation Victoria (Gen V)• Context • Sampling frame • Components• Focus
2. Data that will be available • Availability and accessibility of biospecimens
3. Progress - piloting and recruitment strategy4. Research questions relating to childhood cancers that could potentially be explored through the I4C.
Final Scope, Protocol
Pilots and funding
Dress rehearsal, collection of MSS for Gen V
Recruitment begins
2013 2014 2015 2016
- BIS Linkage pilot
- MIS Cord blood collection pilot
- Gen V recruitment pilot
- LSAC health check pilot
- MIS MSS pilot- Gen V Ethics Pilot
- Funding Campaign
1. Introduction to Generation Victoria (Gen V)• Context • Sampling frame • Components• Focus
2. Data that will be available • Availability and accessibility of biospecimens
3. Progress - piloting and recruitment strategy4. Research questions relating to childhood cancers that could potentially be explored through the I4C.
RCH - largest paediatric cancer centre in Australia
– Over 200 cancer cases per year (>100 leukaemias)– Gen V will:
• Capture extensive birth, and environmental data and birth biospecimens from >100,000 births in a 2 year period
• Relevant data for current I4C hypotheses (e.g. birthweight, epigenetics)
• Additional data and biospecimens for testing new hypotheses (e.g. infection via medical records, neonatal cytokine & vitamin D levels from blood spots)
• Infrastructure for serial measures (direct or via linkage)
Gen V: Draft biospecimen access process
Application received
• Acknowledgment / timeline
Application process
• Biospecimen committee report• Scientific Oversight committee
review• Steering committee decision
Application
approved • Notification and MTA
Sample and data distributio
n
Month 1
Month 2
Month 3
Acknowledgements
Gen V Steering Committee:-Sheena Reilly -Melissa Wake-Katrina Allen-Richard Saffery-Katrina Williams-Anne-Louise Ponsonby-Andrew Davidson-Kathryn North-Nigel Curtis-John Carlin-Will Siero
Campus Advisory Committee members
Working Groups:-Engagement-Ethics and Governance-Recruitment and Retention -Measures and Outcomes-Biospecimens -Health Services Research-Linkage and GIS
Campus Partners