The University of Queensland's Schonell Special Education Research Centre will celebrate the 20th anniversary of its Down Syndrome Research Program in September.
Established in 1977, the program has involved more than 200 families of children with Down syndrome, following many of the children from birth to adulthood.
The program is recognised as the world's longest continuous study of Down syndrome, providing unique and important insights into the health and development of the children as well as information about family functioning.
Researcher Dr Anne Jobling said most of the 41 children (born May 1976 to December 1978) who joined the study at its inception, either at birth or soon after, were still taking part in the study.
'With the exception of several children who have died, all the children are still with us, including some who have moved interstate,'' she said.
'The program continues to collect information on these children and maintains contact with the sample of children and young adults with birthday cards and a Christmas newsletter.
'A second cohort of 33 children born between January 1973 and December 1975 joined the program at a later age, and these two groups of children have been with us for 20 years.'
These two samples of children represent almost complete cohorts of children born in the greater Brisbane area with Down syndrome based on incidence and survival rate figures.
Other children have been recruited at various times to take part in specific individual projects.
The longitudinal study has collected data about the children's cognitive development, motor development, temperament and family functioning, including the impact on parents and siblings on having a child with Down syndrome in the family.
As the children have grown up, studies have included looking at their ability to learn to manage their own behaviour, and the choices they and their families have made with regard to a range of issues.
'As the research develops we can see there are other aspects within their lives that can be researched, ' said Dr Jobling.
'For example, now many children spend their early schooling in regular school settings, in contrast to the children in 1977 and 1978 who more regularly attended special schools. With this move to more inclusive schooling, it is very important that the children learn to manage their own behaviours in these settings.'
Dr Jobling is currently looking at health knowledge and behaviour as well as safety awareness in adolescents as they develop independent living and life skills.
'There are also issues such as the effect of television advertising on diet and lifestyle, including the use of cigarettes and substances such as alcohol,' she said.
'We are looking at their development as they age,with many of our original samples now in the 20 to 25 age group. We are continuing to assess their motor skills, height, weight, and activity levels since they left school and at their work placements.'
Researcher Dr Monica Cuskelly said one of the aims of the study had been to examine the myths surrounding Down syndrome.
'Educators and people in health services consider that children with Down syndrome have a certain set of characteristics, learning abilities and family functions,' she said.
'Down syndrome is only a genetic description...and really the only thing these children have in common is the extra chromosome. There is as much individuality and variation among children with Down syndrome as there is among any other group of children.'
Each year the Centre runs a Family Information Day in conjunction with the Down Syndrome Association to talk about research and other areas in which families have an interest, including subjects such as the law, sexuality, and DNA testing.
'It is an opportunity to catch up and one of the ways in which we can thank families for their help to us,' said Dr Cuskelly.
'The families are extremely important to us; without them there is no research.'
Dr Cuskelly and Dr Jobling said the family picnic day on Sunday, September 21 during the 20th anniversary celebrations was designed both to 'thank and involve' the families.
For more information, contact Dr Anne Jobling on (07) 3365 6405.
