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PWS Places High Burden on Caregivers, New Publication Reports

The first publication stemming from the work of the PWS Clinical Trial Consortium has been published in PLOS. It shows that PWS places a high burden on caregivers, impacting many aspects of the lives of caregivers.

pws-places-high-burden-on-caregivers-new-publication-reports.jpgPWS places a high burden on caregivers, impacting many aspects of their lives, according to a new publication in PLOS. The publication, High Levels of Caregiver Burden In Prader-Willi Syndrome, is the first stemming from the work of the PWS Clinical Trial Consortium (PWS-CTC). The study examined burden in 142 caregivers of children and adults with PWS living in the US using the Zarit Burden Interview (ZBI).

“Besides its implications for future lines of research and therapeutic development, this study is the direct result of collaborative efforts that combine the skills of patient, industry and academic representatives to foster clinical trials for individuals with PWS,” said Nathalie Kayadjanian, PhD, Executive Director PWS-CTC and Director of Translational Research at FPWR.

“Our study not only highlights the critical unmet need for support for caregivers of individuals with PWS but also points to the possibility of including caregivers when assessing effectiveness of treatments on individuals with PWS,” said Lauren Schwartz Roth, PhD. Schwartz Roth is a PWS-CTC member, FPWR Research Team member, and Clinical Associate Professor at University of Washington, Department of Rehabilitation Medicine.

For the full publication, visit PLOS | ONE.

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Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.