MedPanel, an independent market research agency, is supporting a research study on behalf of a therapeutics company, which is focused on better understanding the experiences of families affected by Prader-Willi Syndrome (PWS), particularly related to hyperphagia (constant hunger and inability to feel full).
They are asking caregivers of people aged 4 and older who are living with PWS to participate in a paid, 15-minute online survey. Your responses will go a long way at ensuring that this research will help those in the PWS community in a very real way, in terms of developing new treatments and further educating the public on the impacts of PWS on families nationwide.
The Goals of the Study Are:
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To understand how hyperphagia impacts daily life
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To help the study sponsor develop strategies used to manage hunger and food-seeking behaviors
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To understand what helps or makes it harder to begin or maintain treatment
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To find out from caregivers what support, resources, or therapies are still needed
Participants MedPanel is Hoping to Reach
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Caregivers of individuals 4 years of age or older, which are diagnosed with PWS
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Participants involved in treatment decisions
What Participation Involves
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A brief online screener to determine qualification for the survey
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A 15-minute online survey
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Participants receive an honorarium as a $50 check as a thank you for their time
Is This Survey Private?
Participation in this survey is entirely voluntary and is on a double-blinded basis, meaning that your name, contact information, and all other aspects of a participant’s identity are confidential and not shared during this study. MedPanel would only collect participant’s contact information to issue a payment if the person completes the survey. The sponsor of the study would NOT be in possession of this information.
Would You Like to Participate?
If you would like to participate, please click the button below to take a brief screener to determine your eligibility. If you are eligible to participate, you will be automatically directed to the actual survey:
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.