New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS

Individuals with PWS often exhibit rigidity, obsessive-compulsive tendencies, emotional outbursts, as well as unusual thoughts and behaviors. However, the onset and severity of these behaviors vary among individuals with PWS depending on age, genetic subtype, and other factors.   

FPWR has funded Dr. David Evans at Bucknell University to conduct a study to identify early risk factors for certain behavioral challenges in PWS. The project will examine how behaviors may change over time within each individual and across age and genetic subtypes. Parents will be asked to complete surveys 3 times over a year. Information from this study will help identify the earliest signs of challenging behaviors in PWS so they can be addressed as soon as possible and support parents and clinicians in developing earlier and more individualized interventions. 

This study will include the analysis of responses to 6 surveys located within the Global PWS Registry:

• Diagnosis 
• Psychological and Mental Health 
• Anxiety and Distress
• Inventory of Feelings and Experiences 
• Routines Inventory 
• Strengths and Difficulties

How Can You Participate? 

We're asking caregivers of people with PWS ages 2+ to complete the 6 surveys today, then again in 6 months and 12 months for a total of 3 times. We expect that completing the surveys will take 30 to 45 minutes.  Your responses will help us identify the earliest signs of challenging behaviors, with the goal of identifying those at highest risk who might benefit most from individualized interventions and management. 

To get started, please visit www.pwsregistry.org. If you have not previously enrolled in the registry, you will need to join and complete the consent before accessing the surveys.  

Step-By-Step Instructions To Access Your Surveys:

New Registry Users

1. Go to the Global PWS Registry

2. Create and account

3. Add a participant and complete the consent

4. Click the Take Surveys button.

5. Complete the Getting Started Survey

6. Complete the six surveys listed above. They will be located under the 'Surveys Not Taken' tab. 

Existing Registry Users

1. Log in to your Global PWS Registry account.

2. Click the Take Surveys button.

3. The surveys will be located under the 'Initials Surveys', ‘Updatable’ or ‘Surveys to Retake’ tabs.  

4. Complete the 6 surveys listed above.

Participants who complete/update all six surveys by March 31, 2025 will be entered to win 1 of 4 $100 Amazon gift cards!