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Collaborative Effort Fuels Sarcoma Advancements

Laura Panjwani
Published: Monday, Aug 15, 2016

Denise Reinke, MS, NP

Denise Reinke, MS, NP

Scientific breakthroughs can be difficult in a rare disease such as sarcoma, which makes up less than 1% of all adult cancers and comprises more than 50 subtypes.

Pharmaceutical companies do not always want to invest in such a small market, and it can be difficult to even recruit enough patients to run an effective clinical trial.

The Sarcoma Alliance for Research through Collaboration (SARC) is working to change that, said Denise Reinke, MS, NP, president and CEO of the nonprofit organization.

“SARC was formed because a group of researchers and physicians—from both the clinic and the laboratory—realized that, if you want to make progress in a rare disease, you really need to pool your resources intellectually, as well as your patient and monetary resources to be as smart as possible in designing what needs to be done,” said Reinke.

The Ann Arbor, Michigan–based organization was created in 2003 by medical and pediatric sarcoma experts at 5 major medical facilities to conduct innovative sarcoma research dedicated to advancing the care of their patients. Today, they have a large presence in the sarcoma space—providing tools such as the SARC Biospecimen Bank, genomic data sets, and the sarcoma drug-response portal.

SARC also funds numerous researchers through grants and conducts clinical trials throughout the country. Currently, SARC has 11 active clinical trials, including a phase II study of pembrolizumab (Keytruda), which was the first investigator-led study of the anti–PD-1 agent to be conducted in advanced sarcoma. Interim results, which were presented at the 2016 ASCO Annual Meeting, demonstrated that pembrolizumab reduced tumor size in 33% of patients with undifferentiated pleomorphic sarcoma and dedifferentiated liposarcoma.

To learn more about SARC as well as the challenges and up-and-coming advancements in sarcoma, OncLive spoke with Reinke who, in addition to her leadership role, has previously worked as a sarcoma nurse practitioner on clinical trials and within the pharmaceutical industry.

OncLive: How does SARC find patients for clinical trials that focus on just a few subtypes in such a rare disease?

Reinke: We bring together all the centers across the United States with sarcoma programs. It is mostly the larger centers that have dedicated sarcoma programs, so we try to have as much of a geographic reach as possible with our trials, so that patients have access and are not at a disadvantage because they don’t happen to live in a big city like Houston, Boston, or New York. We try to—as much as possible—have our trials open across the country so that patients who need these treatments have the best opportunity to be included.

As subtyping becomes more common and other cancers are broken down into smaller groups, what can researchers studying other tumors learn from sarcoma?

We joke, “welcome to our world,” as we have been working with small subtypes for a while. The collateral benefit of this is companies are now beginning to realize that this is an important space to explore and that sarcomas have an equal footing in the game. Maybe it’s not so much about where the cancer is anatomically, but what the genetic signature and footprint of it is. That can be across different types.

Our understanding of how to do this work in a small population and how to recruit that population can certainly be applied across other types of cancers.

Have new technologies, such as next-generation sequencing, that help define different subtypes had an impact in the treatment of patients with sarcoma?

It still remains to be seen. The genetic profiles of all cancers tend to be complex and they don’t always just identity, “here is what is wrong and here is the drug against it that will give a patient benefit.”

It hasn’t turned out to be as clear-cut as we had hoped. It has helped us begin to understand some of the potential drivers and, hence, identify some potential treatments to target those drivers, but there is still a lot of work ahead. All of the incredible people working across all types of cancers continue to be perplexed and stumped by how to eradicate these diseases.


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Online CME Activities
TitleExpiration DateCME Credits
Clinical Interchange™: Moving Forward From the Status Quo for the Treatment of Soft Tissue Sarcoma: Key Questions and New Answers to Optimize OutcomesOct 31, 20182.0
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