Natural History Study of Serious Medical Events in PWS (PATH for PWS)
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government.
Read our disclaimer for details.
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.
Condition or disease
Every 6 months, participants or their caregivers will be asked to update online surveys about medical problems and serious medical events, as well as provide information about conditions and behaviors often associated with PWS such as hyperphagia. Because this is an observational study, no study drug will be provided and no visits to a doctor or clinic are required.
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Layout table for eligibility information
Ages Eligible for Study:
5 Years and older (Child, Adult, Older Adult)
Sexes Eligible for Study:
Accepts Healthy Volunteers:
Participants with PWS who are at least 5 years old and live in the United States, Canada, Australia, or New Zealand
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
Participants or their caregiver meeting any of the following criteria will be excluded: