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Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Thursday, 14 March 2013

Important survey on development in young people with Down syndrome

Information about, and the link to the Study on Development in Children and Adolescents with Down syndrome was posted by the Adult Down Syndrome Clinic  (based in Chicago) yesterday (13th March 2013). 

We are aware that similar phenomena have been observed amongst a small number of young Australians with Down syndrome, generating the same concerns among their physicians.  

The online survey is open to international participants.

The Adult Down Syndrome Clinic wrote:

We have a small subset of patients who have declined is skills at a young age- usually adolescents-teens to early 20's. It isn't many, but it is a challenging problem. We have participated in many discussions with other practitioners who also have a small number of patients in their practices. We also recently particpated in an international teleconference on the subject. There remain many gaps in the knowledge about these individuals and why this has occurred.

This post is about a study on the development in children and adolescents with Down syndrome. One of the particular interests behind the study was to further learn about the above-mentioned individuals.

Whether your son or daughter has experienced a decline in skills or not, your participation in this study will be helpful.

Please review the information below:
Study on Development in Children and Adolescents with Down Syndrome
(The study has been IRB approved through Vanderbilt University) 
We are interested in knowing about the course of development of your child with Down syndrome. Development does not always proceed through a smooth course. Life experiences and certain behaviors may have influenced the course of development of your child with Down syndrome. We are particularly interested in knowing about those children who have experienced set-backs in development that are either temporary or long-lasting. We are also interested in knowing how many children, adolescents and young adults show behaviors that may interfere with their development.
We are asking that parents of children with Down syndrome who are between the ages of 5 and 30 years take time to answer our questions about their child’s development. The survey will take between 30 and 45 minutes to complete and all responses to questions will be anonymous. We do not collect any identifying information and we cannot trace responses back to an email address. 
Your answers to the questions on the survey will be helpful in understanding how individuals with Down syndrome vary and how behaviors and experiences influence development. 
If you have questions about this study you may contact Dr. Devenny , an investigator, at or the (US) toll-free number 1-855-784-6489.

This research is being conducted by:
New York State Institute for Basic Research in Developmental Disabilities: 
Darlynne Devenny, Ph.D., Karen Amble, M.S.W., Anna Matthews, M.Sc. 
Vanderbilt University Kennedy Center:
Robert Hodapp, Ph.D., Elizabeth Dykens, Ph.D., Richard Urbano, Ph.D.
We are grateful to all who agree to participate. You can find the survey at

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