Dr. David Rhodes on PSC Disease

October 28, 2011 - Professor David Rhodes, Director of the Center for Plant Environmental Stress Physiology (CFPESP), Department of Horticulture, Purdue University talking with Professor Kasturi Haldar, Director of CRND. (Photo: Wall, 2011)

David Rhodes scientific roots are in plant physiology and biochemistry. However, on his recent visit to the CRND, Professor Rhodes addressed students as a scientist with a profound interest and depth of knowledge about the rare disease, Primary Sclerosing Cholangitis (PSC). PSC disease is a rare chronic liver disease that affects the bile ducts inside and outside the liver, causing narrowing and tissue scarring (cirrhosis) that often leads to liver failure. PSC patients in end-stage liver disease account for 5% of all US liver transplants. Dr. Rhodes is a board member and chief scientific advisor to PSC Partners Seeking A Cure, an npo supporting patients, families and research for PSC disease. Dr. Rhodes also has the largest database in existence for PSC related conditions.

In preparation for the class, Dr. Rhodes recommended that students read several papers, which would give them a current view of the disease, its characterization, pathogenesis, epidemiology, comorbidities, theories of causation, genetics, and therapies. To begin class, Dr. Rhodes reviewed what is known about the disease. Then, he proceeded to an impressively systematic discussion of the "deficiencies" of our understanding of PSC by visually outlining the gaps in knowledge about PSC pathogenesis and the lack of effective treatments. Dr. Rhodes conveyed a picture of PSC as a heterogeneous disease, presenting a variety of genetic risk factors and remaining relatively undefined with respect to environmental risk factors. Notwithstanding its complexity and the limitations in current knowledge, Dr. Rhodes expressed reasons for optimism and his expectation for a hastening in novel therapies research: the rapidity of recent progress in discovering some of the pathogenic mechanisms and genetics of PSC and the formation of an International PSC Study Group (IPSCSG) that will help coordinate efforts in basic and clinical research.

Dr. Rhodes discussed the work of PSC Partners with patients, families, and scientists as well as the organization's urgent aim to develop a patient registry to support a natural history study along the lines of CRND's natural history collaboration with NIH on NP-C disease. PSC Partners hopes that the formation of this patient registry will accelerate the clarification of PSC's natural history and identification of biomarkers as well as support the quantification of measures of care and measures of quality of life that are of vital interest to clinicians and researchers. Finally, Dr. Rhodes and CRND students discussed the value of careful planning and collaboration to achieve standards of cross-compatibility with other existing rare disease databases.

In additon to Dr. Rhodes extraordinary ability to convey the importance of systematically mapping what is know and unknown about a disease as a strategy for focusing research and structuring collaboration, he left the CRND class with a powerful example of a dedicated and deeply caring individual who is able to expand his area of expertise and change the future for rare disease patients.

To learn more about PSC Partners Seeking a Cure, please visit their website: http://www.pscpartners.org/

 

 

 

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