NCT03718416Completed
Natural History Study of Serious Medical Events in PWS
Non-Interventional, Observational, Natural History Study of Serious Medical Events in Prader-Willi Syndrome
Source: ClinicalTrials.gov · Last updated 29 Feb 2024
Brief summary (registry, in English)
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.
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 700 (actual)
- First submitted
- 12 Oct 2018
- Start date
- 28 Sept 2018
- Primary completion date
- 31 Jan 2024
- Lead sponsor
- Foundation for Prader-Willi Research
- NCT number
- NCT03718416
What you commit to
- Study type: Observational
- Participants enrolled: 700
- From 28 Sept 2018 to the primary completion date, 31 Jan 2024
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Participants or their caregiver meeting any of the following criteria will be excluded:
- Is not able to read and understand English
Who the study is looking for
- 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
Age in the registry: 5 years to - · Sex: All · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Save your city in your profile to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Foundation for Prader-Willi Research (FPWR) Coordinator of this site? Confirm its status | Walnut | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.