Research Projects and Patient Advocates

Categories: Winter 2005

QUEST would like its readers to know about SPORE (Specialized Program of Research Excellence) from the National Institutes of Health and the role patients can have in supporting prostate cancer research.

dBlair dShevrin rGould

Dr. Catalona has begun a collection of samples through the Prostate Cancer SPORE.

These samples are a valuable resource for discovering the causes of prostate cancer, as well as what determines the aggressiveness of prostate cancer.

The purpose of the Northwestern Prostate Cancer Biorepository is to obtain tumor tissues, seminal vesicle and prostatic fluid, and serum and leukocyte samples for genetic testing.

Also, SPORE has a prostate patient advocate team of lay volunteers who represent the patient prostate cancer community in disseminating information and in helping provide a lay perspective to researchers involved in clinical trial development.

Bill Blair and Russ Gould are leaders of the national patient advocate program for prostate cancer and Chair and Vice-chair respectively of the Northwestern Patient Advocate SPORE.

Gould said that their group is very much a part of the development of research projects at Northwestern.

“We are invited to participate in planning meetings and asked our reactions to proposed research studies. And we take our roles seriously.

“We go to monthly scientific meetings, learn about new technologies and respond to concerns of principal investigators. We have regular discussions about SPORE program clinical trials,” Gould said.

One of the main functions of SPORE advocates is to represent their prostate cancer constituency and in meetings ask researchers: How will this research help prostate cancer patients?

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