OVERVIEW

The goal of this study is to better understand how caring for someone with PWS impacts primary caregivers. The data collected from the survey will be used to understand the quality of life of those caring for someone with PWS, and how the impact of caregiving may change over time. The information gained from this study may also be useful in measuring how new therapies for PWS improve quality of life not only for patients, but also for their families/caregivers.

Caregivers will complete the survey twice; now, and then again in six month so that we can understand how things may change over time. The survey asks primary caregivers to answer questions that will measure the severity of PWS symptoms, such as ‘hyperphagia’ (excessive hunger), and will also ask how caring for a person with PWS impacts quality of life.

The study is being conducted by the International Consortium to Advance Clinical Trials for Prader-Willi Syndrome (PWS-CTC). The PWS-CTC was created to help accelerate clinical trials for PWS and is made up of PWS patient organizations, pharmaceutical companies working in PWS, and university researchers. One of the goals of the PWS-CTC is to understand the social, financial, and quality of life impact of PWS on caregivers. The survey is confidential and the results will only be reported in de-identified aggregate form.

HOW TO PARTICIPATE

The survey is available on-line in the Global PWS Registry. The survey is titled “Impact on Caregivers.”

New to the Global PWS Registry? For detailed instructions on how to create an account and get started in the Global PWS Registry, please click here (Getting Started in the Global PWS Registry). Steps to access the Impact on Caregivers Survey include:

  1. Create an account
  2. Review and comple the informed consent
  3. Complete the “Getting Started Survey”

Already have an account in the Global PWS Registry? For detailed instructions on how to log back in to your account and access surveys, please click here (Guide to Updating Your Surveys in the Global PWS Registry). Step to access the Impact on Caregivers Survey include:

  1. Login into your account
  2. Click “Participant Enrollment”
  3. Click “Take Surveys”
  4. Click “Take” next the the Impact on Caregivers Survey

Not sure if you have an account in the Global PWS Registry? Questions about the Registry or about the Impact on Caregivers Survey can be directed to info@pwsregistry.org