Adolescents with Down Syndrome or Fragile X Syndrome and Their Families

We are currently recruiting adolescents with fragile X syndrome and their families for a study on the development of language and communication skills during adolescence

Project Director:		Waisman Center
Leonard Abbeduto		University of Wisconsin - Madison
Professor of Educational Psychology		1500 Highland Avenue
(608) 263-1737		Madison, WI 53705

Goal of Our Project

To understand the challenges in language and communication facing adolescents with fragile X syndrome or Down Syndrome.

We will achieve this goal by:

Describing the range of developmental outcomes possible for adolescents

Identifying the biological, environmental, and psychological factors that lead to different outcomes

Identifying language and communication challenges specific to fragile X or Down Syndrome

Who is Eligible?

Adolescents with fragile X syndrome:

Between the ages of 10-15 years

Must use spoken language as their primary means of communication

Family must be native English speakers

Must live in the continental United States

Biological mother also must be willing to participate

What are the Benefits to Participants?

Families will receive:

A narrative description of the adolescent's performance on selected measures of functioning

Report of the results of an autism evaluation

Project newsletters on overall findings

Informational pamphlets and books on fragile X or Down Syndrome and related topics

Project Time Frame

Fall of 2004 through 2009. Calls are welcome from families at anytime!

Do I Have to Live in Wisconsin to Participate?

No. Families from anywhere in the continental United States can participate. We'll pay all travel expenses.

When and How Often will Families Participate?

4 separate visits to the Waisman Center, approximately one year apart for families with adolescents wih fragile X syndrome

2 or 3 visits separated by a year or two for families with adolescents with Down Syndrome

Each visit will typically involve testing over two days with morning and afternoon sessions

What will Participation Involve?

Adolescents will complete tasks to measure language and thought

Parents will be asked to complete questionnaires about their adolescent's development and about their family life and background

During the first visit, a blood sample will be drawn from the adolescent for genetic analysis and an autism evaluation will be scheduled for the adolescent

Mothers will complete a communication activity with their adolescent during a session, complete some psychological tests, and be interviewed about their adolescent's development

Where will the Testing be Conducted?

At the Waisman Center on the University of Wisconsin - Madison campus in Madison, WI

Air travel and hotel stay for families will be arranged and paid by the project

Additional travel costs for families will be reimbursed

Is there a Charge for Participation?

There is no charge for participation

Adolescents receive a certificate of achievement and a gift

Families receive $50 honorarium per visit

How can I receive more information?

Click on the link and fill out the form as completely as you can, don't forget to include your name and email address.