Resources 

 

[VIDEO] What is PWS?
This 5-minute video provides a brief description of PWS and the impact it has on the family and caregiver.  Watch the video >>
 

[VIDEO] PWS Across the Lifespan

The PWS-CTC has collaborated with Partner-Films to produce a 20-min film to illustrate the complexity and challenges of PWS on the individual with PWS and their families.  Watch the film.
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PWS Patient Voices Survey 

This survey of more than 750 parents and caregivers of individuals with PWS captured the symptoms associated with PWS that affect day-to-day living, the effectiveness of current medications, and attitudes towards clinical trials. Learn more and download the full report.

Measuring Caregiver Perspective of Unmet Clinical Needs for PWS​

A national online survey of caregivers that helped identify caregiver priorities for potential treatment and quantified caregiver preferences for the benefits and risks of treating PWS. Read the publication.

High Levels of Caregiver Burden

Caregivers of children and adults with PWS were surveyed using the Zarit Burden Interview (ZBI) in order to measure the level of burden in caregivers of individuals with PWS, to explore the impact of PWS on caregiver quality of life, and to assess the ZBI as an indicator of that impact. Results are explained in our publication High Levels of Caregiver Burden in Prader-Willi Syndrome.

 

 

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