Practice Guidance on Primary Sclerosing Cholangitis (PSC) and Cholangiocarcinoma (CCA)
“There is so much information in these 162 pages. It is a wealth of information for us to share over time with others, to help update and inform physicians. What a gift to everyone living with PSC,” says PSC Partners Medical Science Liaison Joanne Hatchett.
AASLD GUIDANCE: Click here to view the updated American Association for the Study of Liver Diseases (AASLD) Practice Guidance on Primary Sclerosing Cholangitis (PSC) and Cholangiocarcinoma (CCA) and Supplemental Materials.
This newly updated guidance includes:
- Updated diagnostic steps and criteria
- Pediatric surveillance recommendations
- Discussion of antibiotic and URSO use
- Assessments of bone loss and nutritional deficiencies, and lots more.
The supplemental materials include:
- The AASLD PSC Guidance Support Statement, which includes their stance on access to and insurance coverage of oral vancomycin as a PSC treatment. In part, it reads, “In the absence of a definitive clinical trial, the decision to use an off-label medication should remain between the doctor and the patient … (The lack of such a trial) should not be used as justification to restrict coverage of this treatment if a physician feels it is the right course of action.”
- The PSC Partners Statement about the new guidance, which reads, in part, “PSC Partners does not take a position on the use of any specific off-label medication and instead encourages patients to work with their doctor to discuss a treatment plan.” (See the PSC Partners Statement about the Use of Medications Not Approved by the FDA for PSC here.)
Importantly, two future directions proposed in the guidance align with PSC Partners efforts through the WIND Initiative and PROM project. These major research initiatives were launched with support from the PSC community, including some of the authors of this guidance.
Thank you to AASLD and the authors of this importance guidance, who spent much of 2021 and 2022 working on this important document.
“When this document is formatted and formally published in the journal Hepatology, it will empower advocacy for the broader PSC community, and provide individuals with a valuable resource to take to their physicians while self-advocating for the screening and testing that are recommended,” says PSC Partners Director of Research Strategy Ruth-Anne Pai.
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