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2019. Clinical Characteristics and Outcomes Reported by Patients with Primary Sclerosing Cholangitis Through an Online Registry

Plain-Language Summary

Research on PSC progression has been largely limited to cohorts of single nations or referral centers. The PSC Partners Patient Registry hosts an international cohort of over 800 PSC patients (at time of publication). In this study, a variety of demographic and clinical characteristics were reviewed to compare against other available data. Our findings confirm those from previous studies, although the Registry contains a higher proportion of women with PSC than other representative studies.  Since our population is heavily US-based, our analysis looked at differences in symptoms and medication use. No significant difference was found in rate of symptoms versus treatments, specifically treatment with ursodeoxycholic acid.

Authors: Kuo A, Gomel R, Safer R, Lindor KD, Everson GT, Bowlus CL.


Journal: Clin Gastroenterol Hepatol. 2019;17(7):1372‐1378.doi:10.1016/j.cgh.2018.04.047


Excerpts:


"We analyzed data from the worldwide PSC Partners Patient Registry, an international online database established in 2014 to obtain information from individuals with PSC or their caretakers and compare symptoms, disease progression, and treatments of PSC in the United States and other countries."


"Conclusions: Our findings from an analysis of data from the PSC Partners Patient Registry confirm those from previous studies, although we found a higher proportion of individuals with PSC to be female. In addition to allowing efficient collection of patient-reported outcomes, the patient-driven registry allows for inclusion of previously under-represented cases of PSC."


Pubmed.gov listing and abstract here.


Full-text article available here.

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