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.
Jennifer Miller, MD