Genetics and Behavior in Prader-Willi Syndrome

A Collaborative Research Project of the University of Rochester Medical Center & Children’s Mercy Hospital, University of Missouri, Kansas City

Dr. Merlin Butler at Children’s Mercy Hospitals and Clinics, University of Missouri, Kansas City and Dr. Jennifer Zarcone at the University of Rochester Medical Center have embarked on a study to better understand eating and compulsive behavior in individuals with Prader-Willi syndrome (PWS). We are looking at these behaviors in a variety of ways:

1)      How people with PWS with the different genetic subtypes differ according to each of our measures (see 2-4).

2)      How people with PWS respond to different types of pictures before and after a meal, measuring brain response using functional Magnetic Resonance Imaging (fMRI).

3)      How people with PWS perform on a computerized learning tasks looking at both short and long term memory skills as well as other cognitive skills.

4)      How people with PWS are different on these measures from people who are overweight (but don’t have PWS) and people who have a similar IQ level.

We hope to enroll 52 people with PWS (26 individuals with the chromosome deletion and 26 individuals with uniparental disomy), 26 people matched for IQ, and 26 individuals matched for weight (BMI). Participants must be 10 years of age and older and able to participate in a two-day evaluation at the University of Rochester Medical Center. Airfare or reimbursement for transportation for an individual and a caregiver will be provided for people living outside the Rochester area.

This study is being conducted with funding from the National Institute for Child Health and Human Development (HD41672).

Investigators on the project include: Dr. Merlin Butler at the University of Missouri-Kansas City Department of Medicine and Children’s Mercy Hospital, Dr. Jennifer Zarcone and Dr. Deborah Napolitano at the University of Rochester Medical Center, Dr. Travis Thompson at the University of Minnesota, and Dr. Cary Savage at the Hoglund Brain Imaging Center, University of Kansas Medical Center.

For further information or to make a referral, please contact Jean Sloane-Reeves, Telephone: 585-275-1452, the Department of Pediatrics, University of Rochester Medical Center, 601 Elmwood Ave., Box 671, Rochester, NY 14642 or e-mail her at jean_reeves@urmc.rochester.edu 

Click here for a study brochure

Click her for body image study information 

Edited: 08/19/2008