PATH for PWS (Paving the way for Advances in Treatments & Health for PWS) is a natural history study to advance the understanding of medical events in people with PWS.

PATH for PWS is a natural history study co-sponsored by Zafgen and the Foundation for Prader-Willi Research (FPWR) to advance the understanding of the medical history and serious medical events in people with PWS. The data is intended to inform development and clinical trial design for potential new treatments. There is no therapy provided as part of this study.

In addition to the main PATH for PWS study, PATH participants who live in the U.S. will be asked to consider participating in a sub-study that involves providing a blood sample for analysis. Providing a blood sample is optional, and those who choose not to provide a blood sample for the sub-study remain eligible to participate in the main PATH for PWS study.

Enrollment in the 4-year study is underway through the Global Prader-Willi Syndrome Patient Registry, which is powered by the National Organization for Rare Disorders’ (NORD) IAMRARE™ Registry Program. We are looking for at least 500 people with PWS aged 5 years and older to participate.

What are the criteria to participate in the PATH for PWS study?

Why is the PATH for PWS study so important?

What are the PATH for PWS study details?

What is involved in the blood test sub-study, and do I have to consent to this sub-study to participate in PATH for PWS?

What types of serious medical events should be reported through the PATH for PWS study?

What is the time commitment involved in PATH for PWS study participation?

Will I be compensated for participation in PATH for PWS?

Will I be compensated for participation in the blood test (D-dimer) sub-study?

What are the other benefits of participation?

What is a natural history study?

We’re looking for 500 people with PWS ages 5 to adult to participate
Enrollment Instructions

Meet the PATH for PWS Study Investigators

Theresa V. Strong, Ph.D.
FPWR
Lead Investigator
Shawn McCandless, M.D.
Children’s Hospital Colorado
Study Investigator
Jennifer Miller, M.D.
University of Florida
Study Investigator