National Liver Disease Registry Approaches 45,000 Records

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The Liver Disease Registry Establishes the Largest National Database to Improve the Understanding and Treatment of Chronic Liver Diseases

December 27, 2005 – Chronic liver disease affects approximately 10 percent of the United States population, an estimated 30 million people. Researchers at academic medical centers and scientists at pharmaceutical companies are constantly refining therapies and developing new ones. Managers of population health, including public health officials and state Medicaid directors, also face the challenge of liver disease. They must identify and register target populations and introduce evidence-based best practices to improve the care process. Academic medical centers and population health managers need a large national database on liver diseases in order to improve understanding of the natural history of liver diseases, track outcomes, evaluate treatment alternatives, and identify effective approaches to managing the substantial costs of care.

To meet this need, the Liver Research Institute (LRI) launched the Liver Disease Registry, the largest national database of liver diseases, in 2004. LRI is committed to providing domain knowledge, project management expertise and data management technology to improve care and outcomes for people with liver disease. LRI established the registry in partnership with the leaders of five preeminent liver disease centers (University of Pennsylvania School of Medicine and Health System, University of North Carolina School of Medicine-Chapel Hill, New England Medical Center-Tufts Medical School, Georgetown University Hospital and Medical School and the Virginia Commonwealth University Health System-Medical College of Virginia).

In 2005, the Liver Disease Registry reached a total of 44,655 records. The data include: individual identifier codes, patient age and sex, demographic information (race and ethnicity), primary and secondary co-morbid diagnoses, liver function test results, liver biopsy data, prior treatment history, current therapies and medications, and outcomes. All sites contributing data to the Liver Disease Registry must have the prior approval of their Institutional Review Boards, and patient data are managed in accordance with HIPPA privacy regulations.

“The Liver Disease Registry affords us the opportunity to participate in essential data collection along with several other prominent centers for liver disease research and patient care,” said K. Rajender Reddy, M.D., director of hepatology and medical director of liver transplantation, Hospital of the University of Pennsylvania. “We are using the data for important research, and our participation in the registry strongly positions our group for new clinical trials.”

In 2006, the second phase of the operation of the Liver Disease Registry will begin. Up to 20 additional academic sites will be added, and LRI also plans to involve community physicians who treat liver disease.

“The Liver Disease Registry is an invaluable resource for clinical trials and basic research, including evaluating the feasibility of new studies and identifying potential study subjects,” said Stephen E. Steinberg, M.D., medical director, Liver Research Institute. “As a resource for government agencies and large health care provider organizations, the registry provides indispensable data for analysis to bridge the gap between the identification of health problems in population-based data and the actual implementation of best practices.”

About the Liver Research Institute (LRI)

The Liver Research Institute (LRI), headquartered in Denver, Colo., is committed to providing domain knowledge, project management expertise and data management technology to improve care and outcomes for people with liver disease. LRI develops and manages medical information about diseases of the liver and provides the tools and methodology to reach those caring for patients. Thus, LRI partners with population health managers to design, implement and manage projects and programs that advance the efficiency and effectiveness of diagnosis and treatment and thereby improve outcomes and reduce costs for people with liver disease. The benefits? Initiatives tailored to each client’s unique challenges, projects that achieve enduring and scaleable results: measured and benchmarked improvements in patient care and outcomes – and lower costs. For more information, visit or contact LRI at 1.800.760.7505.

NOTE TO EDITORS: A backgrounder on liver disease and the Liver Research Institute is available to members of the media upon request.


Sarah Sheehy

Director of Client Services, LRI


David Aquilina

Strategic Storyteller


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