Prader-Willi Syndrome Association | USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to better understand the demographic makeup of the Prader-Willi syndrome (PWS) parent and caregiver population, to measure stress associated with traveling for healthcare, and to measure the well-being of children with PWS.
“The launch of this study is really exciting,” said Paige Rivard, Chief Executive Officer at PWSA | USA. “Not only is it an incredible opportunity to assess the dynamic needs of the PWS community, but it is also a chance for PWSA | USA to partner with FPWR and Dr. Jennifer Miller, a key PWS clinician, to better serve families affected by PWS. Through this study we will gain a deeper understanding of who our PWS community is and how technology, particularly telehealth, might increase access to care and help reduce the financial burden of travel to specialists.”
“Telemedicine offers new opportunities to improve the health of individuals with PWS, wherever they live,” explained Theresa V. Strong, Ph.D., Director of Research Programs at
FPWR. “We’re excited to be partnering with PWSA |USA and Dr. Miller to explore how telemedicine can be used in the PWS community.”
To be eligible for the study, participants must be 18 years of age or older and be the parent or caregiver of a child with a confirmed diagnosis of PWS. Study participants will be asked to complete a secure online survey and two questionnaires, including a modified version of Generalized Anxiety Disorder 7-item scale (GAD-7) questionnaire. Enrollment for the study is now open.
Anyone interested in participating in the Telehealth Needs Assessment study is encouraged to visit https://bit.ly/3hI36VK to learn more. To download an informational flyer, click Telehealth Project Flyer.
About Prader-Willi Syndrome Association | USA
Prader‐Willi Syndrome Association | USA is an organization of families and professionals working together to raise awareness, provide support, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
About Foundation for Prader-Willi Research
Established in 2003, the mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.
Contact:
Jennifer Miller, MD
Primary Investigator
Phone: 352-334-1390
Email: millejl@peds.ufl.edu
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.