Sarcoma Alliance Supports Doctors and Scientists Who Work Together to Better Treat Patients

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Specialists attending what may be the largest sarcoma conference ever held discuss ways to improve and increase clinical trials for the rare cancer.

“Alliance” was the key as volunteers for the Sarcoma Alliance, a patient advocacy organization, attended the biannual meeting of SARC this week in Chicago.

People sometimes confuse SARC (Sarcoma Alliance for Research through Collaboration), which runs clinical trials at cancer centers, with the Sarcoma Alliance, which provides guidance, education and support to people affected by sarcoma.

Both are national, nonprofit organizations, and both recognize that cooperation is vital when dealing with a rare cancer like sarcoma, said Arthur Beckert, executive director of the Sarcoma Alliance, based in Mill Valley, Calif. It was founded in 1999.

The Alliance educates patients about clinical trials and encourages participation. Clinical trials are run to see if treatments are safe and effective.

In 2001, SARC opened its first clinical trial, said SARC President Denise Reinke, who runs its day-to-day activities. Based in Ann Arbor, Mich., SARC was incorporated in 2005. It now has 13 trials, with two new ones opening, at 44 institutions, she said.

“We realized over time that we had data sets that weren’t compatible,” she said, because different scientists developed clinical trials at different times. In response, SARC made a “data dictionary” of terms so that trials would have a common language.

The result is the Clinical Data Repository, which can assist researchers, Reinke said. The data also is tied to tumor samples from the clinical trials.

“It’s good to do this early before you have too much data,” she said, referring to much older cooperative groups.

The National Cancer Institute (NCI) in Bethesda, Md., has designated cooperative groups to run clinical trials, such as the Children’s Oncology Group and the Southwest Oncology Group, and these groups receive federal funding. The groups have done clinical trials on sarcoma.

Wanting more, sarcoma physicians created SARC. It has become the leader in sarcoma trials, said Dr. Chand Khanna of the NCI, who discussed plans for SARC to work more closely with the pharmaceutical industry.

Dr. Lee Helman, also of the NCI, reported on the SARC012 trial for an oral drug, Saracatinib, to treat patients with resected, recurrent osteosarcoma. Even though the NCI will pay for patients’ expenses, not enough patients have enrolled to justify the trial. He feared SARC might have to give up on it.

The NCI’s Dr. Brigitte Widemann also sought more patients for the SARC006 trial on chemotherapy and malignant peripheral nerve sheath tumor.

Later, physicians said they hoped to get more patients in these trials.

“Because of the rarity of these tumors, it’s hard for one center to enroll enough patients to answer any questions. That’s why SARC makes such a difference,” said Dr. Gina D’Amato of TRM-Oncology in Atlanta. “But not every trial can be a SARC trial because of regulatory and financial issues.”

When a woman introduced herself as being from the Federal Drug Administration, she joked: “Don’t throw darts at me.” Someone in the audience shot back: “Darts aren’t big enough.” The FDA representative said drug companies are more to blame than the FDA for difficult restrictions on clinical trials.

Meanwhile, drug company representatives often blame the FDA for failing to approve drugs that could be useful in treating sarcoma, such as Trabectedin, which is approved in Europe, but continues in clinical trials in the U.S.

Dr. Bob Benjamin of M.D. Anderson Cancer Center in Houston raised the question of how to fund clinical trials that don’t particularly interest drug companies.

The lack of official NCI designation as a cooperative group means more red tape, explained Dr. Charles Forscher of Cedars-Sinai Medical Center in Los Angeles. His hospital will accept any trials done by an NCI-designated group, but subjects SARC trials to a long review process. It would be even more difficult, he said, without SARC handling these details for trials involving different hospitals.

“What SARC provides is an infrastructure,” said Mac Tichenor, who became chairman a year ago. SARC now has $7 million in unrestricted funds, and he invited ideas on how to make the best use of them.

The SARC meeting was held Thursday, in conjunction with the annual meetings of the Connective Tissue Oncology Society and the Musculoskeletal Tumor Society. These meetings end Saturday.

This is the first time that CTOS and MSTS have met together. About 800 people who research sarcoma and/or treat patients around the world are attending the joint meeting, the largest ever in North America, said Barbara Rapp, executive director of CTOS. Dr. Ian Judson of the Royal Marsden hospital in London, a former CTOS president, said he didn’t know of any sarcoma meeting in Europe that has been larger. CTOS President Lor Randall of Huntsman Cancer Center in Salt Lake City said the Chicago meeting may be the largest international conference on sarcoma ever held.

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Suzie Siegel
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