The following publications resulted from access to your de-identified PSC Partners Registry data. 

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.

AASLD The Liver Meeting Poster #1280

Authors: Dhruv Patel, Chung Liu, Veesta Falahati, Alanna Dubrovsky, Monika Sarkar, Christopher Bowlus

Journal: AASLD Hepatology Posters (Abstracts 289–2348) First published:01 October 2019


"Although frequently affecting reproductive-aged women, the impact of PSC and concomitant inflammatory bowel disease (IBD) on pregnancy, is not well-studied. The aim of this survey was to evaluate maternal-fetal outcomes among women with PSC with and without concurrent IBD."

AASLD Poster 2019

Data from PSC Partners Patient Registry

Abstract can be found here

Authors: Buness JG, Ali AH, Tabibian JH, Buness CW, Cox KL, Lindor KD

Journal: [published online ahead of print, 2019 Aug 30]. Am J Ther. 2019;10.1097/MJT.0000000000001065. doi:10.1097/MJT.0000000000001065


"Primary sclerosing cholangitis (PSC) is linked to inflammatory bowel diseases (IBD). Evidence suggests an association between the gut microbiome and PSC. However, the putative relationship between exposure to antibiotics and onset of PSC has never been reported. We observed 3 cases in which patients without antecedent liver or bowel issues developed symptoms leading to diagnosis of IBD and subsequently PSC after being exposed to doxycycline. We aimed to identify, through the PSC Partners national patient registry, additional cases of PSC in which there is a temporal relationship between exposure to doxycycline and onset of PSC or PSC-IBD." listing and abstract

Authors: Zobair M. Younossi Arian Afendy Maria Stepanova Andrei Racila Fatema Nader Rachel Gomel Ricky Safer William R. Lenderking Anne Skalicky Leah Kleinman Robert P. Myers G. Mani Subramanian John G. McHutchison Cynthia Levy Christopher L. Bowlus Kris Kowdley Andrew J. Muir

Journal: AASLD Hepatology First published:20 November 2017


"Our objective was to develop and validate a PSC‐specific patient‐reported outcome (PRO) instrument. We developed a 42‐item PSC PRO instrument that contains two modules (Symptoms and Impact of Symptoms) and conducted an external validation."

"Conclusion:  PSC PRO is a self‐administered disease‐specific instrument developed according to U.S. Food and Drug Administration guidelines. This preliminary validation study suggests good psychometric properties. Further validation of the instrument in a larger and more diverse sample of PSC patients is needed."

Poster and abstract presented at EASL International Liver Congress 2016

Authors: Gomel, Rachel & Safer, R. & Lindor, Keith & Everson, Gregory & Bowlus, C

Journal: Journal of Hepatology. 64. S641. 10.1016/S0168-8278(16)01194-6.


"Conclusions:  Treatment of PSC and concomitant IBD differs between Europe and NA and is not accounted for by differences in disease characteristics. Medication differences may need to be considered in studies of disease progression."

EASL Poster 2016

Data from PSC Partners Patient Registry


AASLD Liver Meeting Abstract 1112

Authors: Gomel, Rachel & Safer, Ricky & Lindor, Keith & Everson, Gregory & Bowlus, Christopher

Journal: Gastroenterology. 150. S1058-S1059. 10.1016/S0016-5085(16)33574-0



AASLD The Liver Meeting Poster #620

Authors: Rachel Gomel, Ricky Safer, Jesse A. King, Estella M. Geraghty, Gregory T. Everson, Keith D. Lindor, Christopher L. Bowlus

Journal: AASLD Hepatology Posters (Abstracts 289–2348)Poster Sessions First published:01 October 2015


"SUMMARY Participants in the PSC Partners Registry have characteristics that are similar to those of other cohors with the exception of a lower male prevalence.

While pain and pruritis are common in PSC patients, we observed a wide spectrum of severity of these symptoms among participants in the registry.

Over 50% of participants are taking UDCA.

CONCLUSION The PSC Partners Patient Registry represents a unique resource for future research and can inform clinical trial design"

AASLD Poster 2015

Data from PSC Partners Patient Registry

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