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Primary Sclerosing Cholangitis

What is Primary Sclerosing Cholangitis?

Primary Sclerosing Cholangitis (PSC) is a rare disorder that damages and blocks bile ducts inside and outside the liver.

 

Primary Sclerosing Cholangitis (PSC) is a rare disorder that damages and blocks bile ducts inside and outside the liver.
Acknowledgement of Primary Sclerosing Cholangitis has not been added yet.
11.0http://www.orpha.net
Synonyms for Primary Sclerosing Cholangitis has not been added yet.
Cause of Primary Sclerosing Cholangitis has not been added yet.
Symptoms for Primary Sclerosing Cholangitis has not been added yet.
Diagnosis of Primary Sclerosing Cholangitis has not been added yet.
Diagnostic tests of Primary Sclerosing Cholangitis has not been added yet
Treatments of Primary Sclerosing Cholangitis has not been added yet.
Prognosis of Primary Sclerosing Cholangitis has not been added yet.
Tips or Suggestions of Primary Sclerosing Cholangitis has not been added yet.
References of Primary Sclerosing Cholangitis has not been added yet.
My UC & PSC History Created by jmoore
Last updated 12 Feb 2009, 05:03 PM

Posted by jmoore
12 Feb 2009, 05:03 PM

I was diagnosed with Ulcerative Colitis about 8 years ago, and PSC about 2 years ago. At this point my liver enzymes are normal and the UC has been pretty much under control for the past few months.

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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My UC & PSC History

Created by jmoore | Last updated 12 Feb 2009, 05:03 PM


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