New study of Behavior in Prader-Willi Syndrome- (7/01/2010)

This new NICHD funded study is a continuation of the current Elisabeth Dykens PWS study to characterize and accurately describe the behavioral features of Prader-Willi Syndrome (PWS) and how these can be different based on age, gender, family history and genetic subtype of PWS. The study looks at key psychiatric features of PWS, like rigid and repetitive behaviors, insistence on sameness, tantrums, aggression and depression and how these change over a lifespan. We want to see if intervention timing is related to successful outcomes and effectiveness.

We hope to see 170 families with children aged 5 and up through adulthood with PWS for a one day visit at Vanderbilt Kennedy Center in Nashville TN over the next 5 years. We want to see how children with PWS change and we will follow them every other year to track changes.  Parents will receive a written feedback report of all results and behavioral management tips during visit. There are travel funds to help with expenses. Parents who are interested should contact Elizabeth Roof at elizabeth.roof@vanderbilt.edu or 615-343-3330 to get more information about the study.