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

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


"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." listing and abstract here.

Full-text article available here.

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