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New Book Looks at Clinical Research from the Patient's Point of View

DEDHAM, Mass., Dec. 19 /PRNewswire/ -- Clinical research volunteer John Cleland has run four marathons, but the race he is proudest to have won was against testicular cancer. Diagnosed with the disease as a college undergraduate, Cleland underwent surgical removal of his testicle and 53 lymph nodes. Three punishing rounds of chemotherapy followed. But when Cleland's cancer spread to his lungs, the 22-year-old's chances for survival looked slim.

Then Cleland's doctor offered one small ray of hope. A clinical trial of a new chemotherapy was beginning and Cleland could be one of the first people to enroll in it. Faced with near certain death and no other viable treatment options, Cleland chose to join the trial.

That was in 1973, and today Cleland, 56, has been cancer free for more than 30 years. The experimental drug he tested has been successfully used on thousands of patients, Tour-de-France winner Lance Armstrong among them, and clinical trials have become the standard launching pad for a growing array of medical advances.

It is for the more than 2 million Americans who participate in clinical research each year that the new book, The Gift of Participation: A Guide to Making Informed Decisions about Volunteering for a Clinical Trial, was published in September. Written by Kenneth Getz, founder and Board Chair of the Center for Information and Study on Clinical Research Participation (CISCRP), the 360-page volume examines clinical research from the volunteer's perspective and answers important questions about this frequently misunderstood field, such as: why clinical trials are conducted; why human subjects are needed; the meaning of informed consent; and how clinical research participants are protected. Practical advice on subjects like insurance coverage, compensation, and tax ramifications for clinical research volunteers also is included.

Getz, who founded the online publisher, Centerwatch, and co-authored the previous book, Informed Consent: A Guide to the Risks and Benefits of Volunteering for Clinical Trials, with Deborah Borfitz in 2002, says the new book expands on his earlier effort.

"After the first book was published, I realized certain pieces were missing that I felt were critical," Getz explains. In an effort to fill the gaps, Getz's new book looks at why clinical research participation matters and explains the important role it plays in furthering medical knowledge. Real-life stories from clinical trial volunteers about their own experiences reveal the human side of clinical research. With a foreword written by Congressman Rick Boucher (D-VA) and a back cover endorsement from Armstrong, The Gift of Participation provides a detailed road map into a complex world many readers will be eager to explore.

Proceeds from the book's sale will be used to help fund CISCRP's efforts on behalf of public education about clinical research. As the public's thirst for new therapies and treatments expands, Getz expects the need for information will grow. That's where he hopes The Gift of Participation will have its greatest impact.

"Ideally, I would like to see the lay public and prospective participants get the book and use it as a guide to learn about and make choices about clinical research," he relates. "I'd be really happy to know that people are using it as one of many inputs in their decision-making about clinical research participation."

The Gift of Participation: A Guide to Making Informed Decisions about Volunteering for a Clinical Trial can be purchased through the CISCRP Online Bookstore or by phone. Copies also may be obtained at major online and retail booksellers. For more information or to purchase a copy, go to or phone at 1-888-CISCRP3.


Karyl Weicher

781-326-3400 (CISCRP office)


Melody Howard Ritt

781-784-5790 (W)

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