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