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CENTERPIECE
 






Clinical Trials, Demystified


Kathy Elza-Brown, seated, and Joanne Finley, director of patient education, at an ask-the-expert session on clinical trials.

For years, oncology researcher Liz Jaffee has been working on a vaccine to treat pancreatic cancer, and on Nov. 15, at a professional meeting in Philadelphia, she and colleague Dan Laheru had some promising news: Their vaccine had significantly improved survival rates in a small group of patients. Press reports, emphasizing that the results were only preliminary, noted that Jaffee and Laheru were planning another clinical trial.

The news reverberated throughout the country, but it really hit home in the office of Kathy Elza-Brown, clinical trials information specialist for the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. When people call to inquire about cancer treatment studies, she is often the first person they talk to.

Within hours of the Nov. 15 announcement, her phone started to ring. In just one day, she logged 20 calls. They came from all over the United States, Canada and Ireland. “Many callers were desperate,” says Elza-Brown. “It was challenging because the study was not even open yet, and I knew there would only be a limited number of patients.”

Elza-Brown matches volunteers to cancer treatment studies at the Kimmel Cancer Center. Typically, when she receives calls from potential participants, she tries to determine the type and stage of cancer. Then she checks to see what studies, if any, they might be eligible for. There are usually well more than 100 studies going on at any given time, and Elza-Brown must be up on them all.

Some callers are clearly not eligible, and with one conversation, Elza-Brown can spare them the time and expense of visiting Johns Hopkins. She turns over the likely candidates to a referral coordinator, who schedules an appointment with a physician.

“Some callers are very savvy. They know that their diagnosis or stage of disease is not favorable and that the odds of the standard treatment are not great,” says Elza-Brown. “They know all about trials, sometimes specific trials. They know what drugs they’ve taken. With these callers, I feel like we are speaking the same language. Others, though, know very little about clinical trials. Some simply say, ‘I wanted to call Hopkins because I know it’s the best in the world.’”

For the uninitiated, Elza-Brown lifts the veil. She might steer them to the Internet or to a comprehensive cancer center closer to home. She might elucidate terms like “eligibility criteria” or “informed consent” or explain what the phases of trials mean. Sometimes, what’s required is a little care and comfort that a nurse can provide.

Several years ago, a group of Kimmel Cancer Center nurses and administrators got together to explore ways to make cancer trial information more accessible and enhance recruitment. Out of those discussions evolved a host of ways to educate patients, including, most importantly, an up-to-the-minute clinical trials database on the SKCCC Internet site and the position of clinical trials information specialist.

Elza-Brown has been on the job for less than six months, but she is clearly no stranger to the world of clinical trials. Starting 20 years ago, as a nurse at the Cancer Center, she took care of many patients who were participating in research studies. Then, about a decade ago, she became a research nurse, focusing on studies involving solid tumors.

“I’m a passionate advocate of clinical trials for cancer patients,” says Elza-Brown. “Patients can get the standard treatment down the street. We offer something different: We have clinical trials. That’s what makes us special.”

Anne Bennett Swingle

Clinical Trials Week: March 20–27, Weinberg Ceremonial Lobby. Information on cancer treatment studies for patients, families and staff.
 

 

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