Primary Sclerosing Cholangitis Conference

[Guest guest]

Does anyone know when and where the next PSC conference is?

Lori A.

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First Weber Group

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Primary Sclerosing Cholangitis Research

Dear PSC Support Group Members:

I have heard from a number of you recently in regards to the ending of the High Dose URSO trial conducted by Dr. Lindor and his colleagues and your desire to use left over funds from this trial to fund other studies in PSC. First, let me say that I appreciate you all for taking the time to write to me and sharing your personal stories. I can only imagine how difficult it is to either be a person affected by PSC or to have a close family member who has PSC. I would also like to tell you all that I admire your courage and your dedication in banding together to collaboratively seek to encourage more research in PSC.

I am sure that you all are disappointed that Dr. Lindor's high dose URSO study ended the way it did. We, at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) are also disappointed. However, I would like to point out that even "negative" studies have some positive results and the study is continuing for at least another year, though the treatment phase has ended. I have had the pleasure of working with Dr. Lindor and his colleagues from the very beginning of the clinical trial. Therefore, I can absolutely assure you that he and his co-investigators and the entire research team did an excellent job of very carefully conducting this clinical trial. They also had the forethought to collect a wealth of data and biological specimens during the study that will be used to further the understanding of PSC -- beyond just answering the

question about whether high dose URSO is beneficial to patients with PSC. While the answer to that question wasn¢t exactly what we hoped, those patients taking high dose URSO can stop - why take an expensive drug that doesn't appear to be of benefit? It also is an opportunity for clinicians and researchers to look for new/different therapies other than URSO.

We at NIDDK share your desire to advance the science for PSC. Unfortunately, we are limited by rules that govern how we distribute funds that are appropriated to us by Congress. Decisions about redirecting funds from one project to another are not a simple task and may not be permissible because of federal regulations and current laws. But, please be assured that we at NIDDK will do everything we can to work with Dr. Lindor to channel the funds allocated for his present study into advancing the science of PSC. In fact Dr. Lindor and colleagues are continuing to collect data on all study participants and are very busy analyzing the data and planning manuscripts and new studies.

One final point that I would like to make to all of you: research is costly in terms of dollars, time and other resources. It really requires a concerted effort on the part of researchers, investigators, patient advocacy groups, industry, the public, people willing to participate in clinical trials, the federal government, and others to achieve meaningful results. It takes basic scientists and clinical researchers working together to advance the science. And it takes people such as all of you to let your voices be heard to make PSC research a national priority.

Sincerely yours,

R. Robuck, Ph.D., M.P.H.

Director, Clinical Trials Program

Division of Digestive Diseases and Nutrition, NIDDK