Body Image in Prader-Willi Syndrome

Dr. Jennifer Zarcone and Dr. Deborah Napolitano at the University of Rochester Medical Center are evaluating how body image and body esteem are different in individuals with Prader-Willi syndrome than people who are overweight.

People with eating disorders, such as anorexia nervosa or binge-eating disorder, often have a poor body image because they think they are heavier than they really are and are unhappy with certain parts of their body. In addition, adolescent and adult females have poorer self-esteem and body image than adolescent and adult males. People with poor body image also are more likely to experience depression and other psychological problems. Body image and self-esteem issues have not been studied very much in individuals with developmental disabilities or individuals with a known genetic disorder that can directly affect a person’s weight. We are looking to see if there are difference between males and females with PWS, difference between people with the deletion or the uniparental disomy subtype, and differences between people who are on growth hormone or not.

We are asking individuals with PWS over the age of 18 to complete two brief questionnaires and provide some general information. We would also like a parent or caregiver to complete a questionnaire (if possible). It takes about 5 minutes to complete the questionnaires. Participant responses will be kept in a confidential manner. Only the investigators will have access to your individual responses. Only summarized data will be presented at meetings or in any publications.

Your participation in this study is completely voluntary. You are free not to participate or to withdraw at any time.

If you would like to participate please contact Jean Reeves, Study Coordinator. She will send you the questionnaires along with a return envelope.

Or call her at 585-275-1452

If you have any questions about your rights as a research subject, you may contact: The Human Subjects Protections Specialist at the University of Rochester Research Subjects Review Board, Telephone: 1-585-276-0005 or toll free at 1-877-449-4441.

Thank you for your help with our study.

Edited: 08/19/2008