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.
A new study by Dr. David Evans at Bucknell University aims 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 are 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.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.