We invite you to join the PSC Partners Patient Registry. The goal of the registry is to collect de-identified (anonymous) information on patients diagnosed with primary sclerosing cholangitis (PSC) in order to increase and accelerate research, enable clinical and drug trials, and find effective treatments for PSC. PSC is a poorly understood disease for which there are currently no effective therapies and no known cure. We hope that our patient registry will provide a forum for PSC patients from all over the world to share their medical information and provide researchers with data that will lead to a better understanding of PSC.
With your help, PSC will no longer be an unknown and forgotten disease. The disease is rare, which makes it difficult to gather information and develop treatments. In addition, the rarity of the disease makes it difficult to conduct large clinical trials. To address these deficiencies, PSC Partners collaborated with the NIH Office of Rare Disease Research (ORDR) to be able to join global rare disease registries.
Collaboration with other rare disease registries may lead to the discovery of similar disease pathways, shared treatments and hopefully will further accelerate the pace of PSC research.
A priority of the PSC Partners Patient Registry is to share detailed medical and other information with scientists and other researchers, while ensuring the protection of your privacy. The registry and the data belong to PSC Partners. Throughout the process, PSC Partners will make every reasonable effort to assure that your personal information, in our registry, is kept confidential. To protect our participants, our registry has been reviewed and approved by an Institutional Review Board (IRB). Only de-identified (anonymous) data will be shared with researchers and other registries. Through your participation and our collaboration with other registries, researchers may find unexpected patterns that may lead to unanticipated new treatments and an eventual cure for PSC.
As registry participants, patients may elect to receive information about opportunities to participate in research, clinical trials, medical advances and other news from the PSC Partners patient registry.
We hope you will register today! Together in the fight...whatever it takes!