Natural History Study of Serious Medical Events in PWS

Completed

Conditions studied: Prader-Willi Syndrome

In brief

PATH for PWS is a study to help researchers better understand serious medical events in PWS over a 4-year period, as well as evaluate how PWS-related behaviors change over time. The data from this study is intended to inform the development and clinical trial design of potential new treatments.

Key facts

Study ID

NCT03718416

Run by

Foundation for Prader-Willi Research

People needed

700

Starts

2018-09-28

Expected to finish

2024-01-31

Last updated by the study team

2024-02-29

Who can join

Age: 5 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Participants must meet all of the following criteria:
• Confirmed diagnosis of PWS
• At least 5 years of age
• Live in the United States, Canada, Australia, or New Zealand
• Must be enrolled or willing to enroll in the Global PWS Registry (https://pwsregistry.org)
• Participants or their caregiver must also meet all of the following criteria:
• Have access to the internet to complete online surveys at least every 6 months
• Agree to receive reminders to complete online surveys
• Allow the staff to ask questions about survey responses if more information is needed and to enter data into the surveys

You may not qualify if…

• Participants or their caregiver meeting any of the following criteria will be excluded:
• Is not able to read and understand English

Where it is running

• Foundation for Prader-Willi Research (FPWR) — Walnut, California, United States

Full record on ClinicalTrials.gov

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