PWS 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.