How does WIND-PSC differ from the Registry?

While both are developed, led, and sponsored by PSC Partners, the PSC Partners Patient Registry and the WIND-PSC study differ in the function they serve, the type of data and the way these data are captured.

 

The Patient Registry is an ongoing, prospective patient-reported registry; patients complete core annual clinical surveys that cover their clinical history and PSC symptoms as well as periodic surveys that cover other areas of interest, such as health equity or topics related to current PSC Partners projects. De-identified data is shared with PSC Partners-vetted research teams. Registry participants receive newsletters and information about drug trials and studies they have the option to join. Patients can join the Registry from anywhere in the world; patients from 54 countries currently participate. The only requirements to participate in the Registry are having a PSC diagnosis and being able to log onto the secure online platform to complete the surveys. Data collected in the Registry facilitates, expedites, and advances PSC research.

 

WIND-PSC is a patient- and clinician-reported observational study and includes systematic and regular collection of data from medical records, imaging data, hospitalization records, lab test results, and annual blood samples. Participants in WIND-PSC must be enrolled at a participating site and must meet eligibility criteria such as not having had a liver transplant or liver cancer. Study coordinators obtain data from annual patient visits and ongoing tests over a period of five years. At the same time, participants will be asked to complete patient-reported surveys online every three months.

 

The systematic capture of these health data over time will create a database of PSC progression. WIND-PSC is a more structured study, data is monitored by a third party, and reported liver-related events (such as progression of fibrosis or acute cholangitis) are confirmed. The data gathered is intended to fulfill the requirements of the FDA to be used to support the design of PSC clinical trials and regulatory filings for new treatments; provide key biomarker data; and provide insight into patient-reported experiences. WIND-PSC will be recruiting patients from up to 20 medical centers in Europe and across North America.

 

We hope you will consider joining the PSC Partners Patient Registry now and, if you are being treated close to one of the WIND-PSC study sites, you will consider joining that initiative as well. You can do both, as each serves different purposes. Both are helping accelerate PSC research in different ways!

 

Read more about the WIND-PSC initiative on the PSC Partners website and on the National Institutes of Health Clinical Trials online database.