Down syndrome

Research and statistics

Down syndrome population statistics

The population of people with Down syndrome in Australia is now over 13,000.

As there is no national, state or territory register of Australians with Down syndrome (with the exception of the IDEA database in Western Australia) this number cannot be rigorously confirmed. However, Down Syndrome Australia is confident that our collation of what little data is available is accurate.

The number of Australian babies born per year with Down syndrome has been over 270 since 2007.

This number has been extrapolated from the recorded birth numbers from four states per the table below. The calculation is based on the knowledge that the geographic spread of the population of people with Down syndrome matches that of the general population.

 

Population
2003
2004
2005
2006
2007
2008
2009

NSW[i]

33

103

98

73

90

85

88

 

VIC[ii]

25

47

54

58

62

62

75

67

QLD[iii]

20

 

 

 

 

71

58

56

WA[iv]

10

22

30

27

24

21

21

29

Total

(% pop)

 

172 

(68%) 

182

(68%)

158

(68%)

176

(68%)

239

(88%)

242

(88%)

152

(55%)

Extrapolated  national  total

100

253

268

232

259

271

275

276

In 2009 the number of babies born in Australia was 299,220[v]. If 270 were born with Down syndrome, the calculated birth rate would be 1 in every 1,108 babies.

The rate of Australian babies born with Down syndrome is approximately 1:1,100.

This is lower than the worldwide rate of around 1 in 700 because of the high termination rates in Australia.

In 2010 there were 1,373[vi] people with Down syndrome living in Western Australia. As 10% of the Australian population reside in WA it can be confidently deduced that:

The population of people with Down syndrome in Australia is over 13,000.

In 2010 the total population of people in Western Australia was 2,352,215[vii].

Therefore the overall population rate of people with Down syndrome is approximately 1:1,700.

The difference between the birth rate of 1:1100 and the overall population rate of 1:1700 is primarily due to the extremely low life expectancy of people with Down syndrome born prior to the mid 1980’s. However, note that current life expectancy for people with Down syndrome of around 60 years is lower than the general population.

Therefore the population of people with Down syndrome in Australia is growing.

From the records of the State and Territory Down syndrome associations and various other State and Territory data sources we believe the approximate breakdown of babies born and overall population of people with Down syndrome to be as follows:

 

Estimated babies born
Population
(based on Aust. pop of 22,342,000)

New South Wales

90

4,340

Victoria

67

3,285

Queensland

56

2,630

Western Australia

29

1,315

South Australia

20

920

Tasmania

4

260

ACT

4

260

Northern Territory

2

130

TOTAL

272

13,140

This information is current as of October 2013.

[i] Mothers and Babies reports – via NSW Department of Health 

[ii] Birth Defects in Victoria reports – via Victorian Department of Health Consultative Council on Obstetric & Paediatric Mortality & Morbidity 

[iii] Congenital Anomalies in Queensland via Queensland Department of Health 

[iv] The Telethon Institute for Child Health Research Data 

[v] Australian Bureau of Statistics 

[vi] The Telethon Institute for Child Health Research 

[vii] The Telethon Institute for Child Health Research 

Down syndrome research Back to top

Looking for participants for your research?

Down Syndrome Australia is keen to facilitate and support research that aims to improve the lives of people with Down syndrome and their families. Whilst DSA is prepared to act as an agent to request of the Federation members (the eight state and territories), for access to their membership, all projects by researchers for recruitment of research participants or distribution of research related surveys must be approved by our research committee.

The research committee can approve projects that meet the criteria. An application fee is charged to seek approval, and a further administration fee is charged for accepted projects to cover the recruitement costs. Please email us for pricing.

Research recruitment application (PDF).

Research recruitment application (Doc).

Recent Research

Down Syndrome Australia aims to upload plain English summaries of as much contemporary research as possible and extends an open invitation to researchers to submit summaries not subject to copyright restrictions to info@downsyndrome.org.au.

Down Syndrome Australia supports the involvement of people with Down syndrome in research, and advocates for people with Down syndrome to provide informed consent on research in which they participate.

For example, see this article from the Wall Street Journal: People With Intellectual Disabilities Get a Say in Drug Trials; Doctors work to boost understanding from those participating in studies related to Down syndrome, Fragile X syndrome

The Down Syndrome NOW (Needs, Opinions, Wishes) Report & Understanding Down Syndrome: Capturing Family Experiences Through Research

In 2004, researchers at the Telethon Institute for Child Health Research, led by Dr Helen Leonard, conducted an important population-based study on the health, needs and functioning of children and young people with Down syndrome.

A general report on the 2004 Down Syndrome Needs Opinions Wishes study Down Syndrome Needs Opinions Wishes Study Report, 2007 provides descriptions of medical conditions and functional abilities by age, as well as information on the family and utilisation of support services.

A summary booklet describing some of the studies emanating from these data, Understanding Down Syndrome: Capturing family experiences through research has also been collated.

Transitions to Employment of Australian Young People with Disability and the Ticket to Work Initiative

The Transitions to Employment of Australian Young People with Disability and the Ticket to Work Initiative report is centred on an exploration of transition from school to work within the context of young people with disability. The report provides youth disability data, explores what factors and elements comprise ‘good transition’ for this cohort and examines the benefit of utilising ‘transition oriented’ networked partnerships to achieve positive outcomes. This report outlines methods and approaches utilised by Ticket to Work and the outcomes achieved via this novel approach to supporting young people with disability to prepare for a ‘life beyond school’. This report draws upon a mix of Australian and international data, as well as primary data drawn from 103 interviews conducted with Ticket to Work participants across Australia.

Authors: Michelle Wakeford and Fiona Waugh

Release Date: August 2014

Full Report Download: Transitions to Employment of Australian Young People with Disability (Full Report) PDF.

Executive Summary Download: Transitions to Employment of Australian Young People with Disability (Executive Summary) PDF.

You can also check out Down Syndrome International's abstracts webpage to find further information on the latest research.