On behalf of Harmony Biosciences Patient Advocacy Team:
If you are the caregiver of someone diagnosed with Prader-Willi syndrome (PWS) aged 6 to 65 years and who also experiences daytime sleepiness, you and your care recipient may qualify for a 60-minute interview that will reimburse you $115 for your participation.
We want to hear about how your care recipient experiences the symptoms of PWS. We also want to hear your opinions on questionnaires used to study whether new medicines can help manage daytime sleepiness in people with PWS. Your experience and that of your care recipient, as well as your feedback, are important to us. This information may help inform how medicines for people with PWS are studied in the future.
By participating, you will:
- Provide information about the experiences of people with Prader-Willi syndrome
- Help us to understand if some questionnaires are suitable for use in future Prader-Willi syndrome clinical trials
- Potentially help patients with PWS in the future
Taking part is completely optional. We are looking for participants from diverse backgrounds and with different experiences. This means that not everyone will be able to take part; however, we will reply to everyone who contacts us.
You will be communicating directly with the Clarivate research team about the interview. Clarivate is running the study on behalf of Harmony Biosciences, a pharmaceutical company.
To learn more about how to participate in this study, please contact PWS@clarivate.com.
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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.
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.
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.
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.
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.