Sarcoma Alliance Announces Tissue Bank to Help Researchers

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Samples of the rare cancer come from a decade of clinical trials across the country. Researchers can submit proposals to gain access to them.

SARC President Denise Reinke, a nurse practitioner

SARC President Denise Reinke, a nurse practitioner

We have been able to work together to make a difference for sarcoma patients.

A national group of physicians and scientists who study sarcoma has opened a biospecimen bank to help research this rare cancer, the Sarcoma Alliance announced Wednesday.

SARC created the bank three years ago, and its staff and volunteers have talked to researchers about it, said President Denise Reinke, a nurse practitioner who also has an MS and MBA. Because the number of sarcoma researchers is relatively small, she said, SARC has never made a public statement about the bank before.

“We’ve never really advertised it or announced that we’re open for business,” she said, but she welcomes researchers to contact SARC if they have a specific study in mind. The nonprofit brings together physicians from different institutions to collaborate on clinical trials.

“We have been able to work together to make a difference for sarcoma patients,” said Reinke from her office in Ann Arbor, Mich.

There are more than 50 subtypes of sarcoma, a cancer of bone, muscle, nerve, fat and other connective tissues. It can arise anywhere in the body at any age, from newborn on up. It represents 15 percent of all childhood cancer cases and 1 percent of adult cancers, said Suzie Siegel of Tampa, a leiomyosarcoma survivor with the Sarcoma Alliance.

The Alliance was founded in 1999 in Mill Valley, Calif., to provide information and support to people affected by sarcoma. Siegel said it is sometimes confused with SARC, which stands for the Sarcoma Alliance for Research Through Collaboration. Both are nonprofits.

Since its founding 10 years ago, SARC has run 20 clinical trials across the country, Reinke said, and has collected thousands of biospecimens. “We’ve even got samples from the first trial.”

Tissue is saved frozen, in paraffin blocks and in unstained slides. Serum samples from blood draws are also frozen. Samples may come from different locations in the patient’s body and at different times, she said. For example, in a trial of the drug Gleevec and dermatofibrosarcoma protuberans, surgeons took fresh-frozen tissue before the patient got chemotherapy and afterward to gauge the drug’s effect.

“We have 20 paired samples, and we’re now looking for money to analyze them," she said.

SARC’s scientific leadership decides who receives samples, she said. Those leaders are divided into three committees: developmental therapeutics, concept review and clinical research. Robert Maki, MD, PhD, medical director of the sarcoma program at Mount Sinai Medical Center in New York, is the director of translational research.

“He moves among the committees; he’s the glue that holds them together,” Reinke said.

“The samples are being collected with annotated information along the way.” She said this includes the patient’s age, treatment, the response to treatment, survival, the location of the tumor, when the sample was taken, and whether the sample came from the original tumor or a metastasis. “Having annotated information is a critical component.”

Samples are stored at the biorepository at Nationwide Children’s Hospital in Columbus, Ohio, where SARC has bought space. Cooperative groups for other cancers save samples there, too, she said.

SARC doesn’t store all of its samples, Reinke said. “It costs to collect, save and analyze samples. In our IGF1R trial, for example, we had 25,000 serum samples." SARC’s scientific leadership decided they needed to keep only a third of those.

Comprehensive sarcoma centers also save biospecimens, often tied to patient details, said Dafydd G. Thomas, PhD, MD, co-director of the University of Michigan's Molecular Pathology Research Laboratory and its cancer center's Tissue and Molecular Pathology Core in Ann Arbor.

"University hospitals like Stanford, Moffitt and UM are sitting on a gold mine of tissue. I have over a thousand sarcoma specimens sitting in my freezers, linked to clinical data," he said. "Unfortunately, I do not have grant money to do much with this resource."

“We have a large tissue bank here at Memorial," said William Tap, MD, section chief for sarcoma oncology at Memorial Sloan-Kettering Cancer Center in New York. The National Cancer Institute has awarded a grant to the center to study sarcoma, and SARC is collaborating, Reinke said.

The NCI pulled together physicians, scientists and advocates who compiled a 2004 report that recommended “establishing a centralized sarcoma tumor and tissue repository.”

“It’s still critical to have a centralized bank, with the resources to properly manage it and establish quality control," Dr. Tap said. One of the challenges is cost, Reinke said, as is the high demand for biospecimens.

“Sometimes institutions don’t want to send them out, she said, because they don’t want to compromise their own institution’s ability to do research.”

For more information, go to the Sarcoma Alliance blog at: http://sarcomaalliance.blogspot.com/2013/07/tissue-banks-help-with-research.html

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