Raymond Lynch Takes First Steps Towards Building National Liver Disease Patient Registry with CTSA Grant

Dr. Raymond Lynch

Dr. Raymond Lynch

May 2019

Emory transplant surgeon Raymond Lynch, MD, is a known advocate for patients with end stage liver disease and hepatocellular carcinoma (ESLD/HCC) who live in poor, rural, and remote communities and experience what he believes to be great disparities in liver transplant access. He has published that these disparities are likely to be exacerbated by the United Network for Organ Sharing (UNOS) recently shifting its liver allocation policy from being based on patients' medical needs within their region to one that distributes livers to candidates within 150, 250, or 500 nautical miles of donor hospitals, defined as the acuity circles policy model.

In order to provide data that could better inform the creation of equitable distribution policies for all social and geographic groups, Dr. Lynch seeks to develop a national liver disease patient registry similar to the United States Renal Data System, which collects, analyzes, and distributes information about chronic kidney and end-stage renal disease in the U.S. As a precursor to this national registry, he has proposed the formation of a Georgia-based registry culled from the liver transplant programs at Emory University and Piedmont hospitals, the only adult transplant programs in the state. The Georgia Clinical & Translational Science Alliance (CTSA) has awarded a pilot grant to funding this initial effort, which Dr. Lynch has named the Collaborative to Overcome Barriers in Access to Liver Transplantation (COBALT).

"The UNOS policy shift is a perfect example of how the full scale of the inequalities that exist for disadvantaged groups, as well as the mechanisms that produce them, are often poorly understood," says Dr. Lynch. "Establishing this registry will give a factual basis to convincing others of how real and pronounced these inequalities are, as well as define the degree by which living in disadvantaged communities reduces access to liver transplant referral, evaluation, waitlisting, transplantation, and increases waitlist mortality.”

With Dr. Lynch serving as principal investigator, the project's research team will consist of co-investigators Rachel Patzer, PhD, MPH, director of the Emory Center for Health Services Research, and Cam Escoffery, PhD, MPH, CHES, health education specialist in the Rollins School of Public Health; research analyst Rebecca Zhang, MD, senior associate at Rollins; and collaborative investigator Raymond Rubin, MD, chief scientific officer at Piedmont Hospital.

All project data will be drawn from the time-frame of Jan. 1, 2010, through Dec. 31, 2017. In the first phase, Dr. Lynch and his team will integrate records from Georgia's inpatient and emergency department discharge (SID/SEDD) databases, the Scientific Registry of Transplant Recipients (SRTR), and the Centers for Disease Control and Prevention in the categories of liver disease emergency department visits, hospitalizations, and deaths; sociodemographic indices; geolocation data; and registry information on proximity to subspecialty care. Once collated, this information will create a detailed atlas of ESLD/HCC disease burden in the state which the team can then analyze to determine key predictors of increased morbidity and mortality.

For the second phase, the investigators will overlay this dataset with Emory and Piedmont's combined electronic clinical practice data records on all ESLD/HCC referrals, evaluations, waitlistings, transplants, and deaths within the defined time span in order to better understand and quantify barriers to transplant waitlist access and survival among Georgia residents.

"This pilot project will demonstrate the feasibility of integrating clinical data from state and national databases with the combined records of transplant centers serving the population of interest," says Dr. Lynch. "Our long-range goal is that the scope of this effort will expand from a single state and two transplant centers to ten centers serving the areas of the country with the lowest waitlist access relative to ESLD/HCC deaths."

Upon securing additional funding and enlisting other centers, COBALT aims to become a multistate coalition with the means to create a nationally-representative atlas of liver disease burden and waitlist access of unprecedented range and detail. Such a national endeavor would be useful for clinicians to highlight areas and locales that would benefit from transplant outreach, and energize academic and governmental initiatives designed to improve quality of care and facilitate the ultimate goal of equitable transplant access.

"For this purpose, the selection of Georgia and its two transplant centers is ideal, given the heterogeneity of communities with regard to transplant access and the opportunity to show collaborative effort by two centers in the same state as a model for broader partnership to overcome disparities," says Dr. Lynch.