National Patient Community, Caregiver and Advocacy Group Directed Strategies to Lead Comparative Effectiveness Research for Liver Cirrhosis

Project: Research project

Project Details


Liver cirrhosis (scarring of the liver) is a chronic disease that affects more than 5.5 million people in the United States (US) and that approximately more than 35,000 patients die from end-stage-liver disease every year. (1) Alcohol dependency, hepatitis C, obesity, male gender, and older age are all independently associated with cirrhosis. (2) The ultimate treatment for patients with advanced disease, is liver transplantation, which follows the paradigm ‘the sickest first.’ Hence, for many patients, who are ill but not quite ill enough to receive a liver transplant from a deceased donor, the only other lifesaving options is a transplantation of part of a liver from a living liver donor (LDLT) or deceased donor liver of lesser quality (e.g., donation after cardiac death liver, hepatitis C liver). Which of the patients ‘who are not sick enough’ would benefit most from those alternatives is presently unclear. Furthermore, hepatitis C represents 46.6% of the population attributable fraction of cirrhosis. (2) With the newly available drugs for the treatment of hepatitis C, it is estimated that the prevalence of hepatitis C will markedly reduce over the next few years and hence over time it will become a minor contributor to the development of cirrhosis in the US. The optimal timing for the treatment of patients with cirrhosis versus those who are not suffering from cirrhosis is unknown. For such and other knowledge gaps related to liver cirrhosis, patient-centered engagement of patients, caregivers and other stakeholders affected or involved with liver cirrhosis will be essential to establish strategies to lead comparative effectiveness research for liver cirrhosis. In this Tier III project we will focus on maturation of our Tier 1 and Tier 2 partnerships, further development of the communication and governance infrastructure. We plan to leverage this infrastructure to develop and finalize the comparative effectiveness research question around the topic of end stage liver disease (ESLD).
Effective start/end date8/1/177/31/18


  • Trailhead Institute (3412516 // 3412516)
  • Patient-Centered Outcomes Research Institute (3412516 // 3412516)


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