Count Me In launches a rare cancer research project to engage leiomyosarcoma patients and families

Count Me In, a non-profit cancer research initiative, is inviting patients living with a rare cancer called leiomyosarcoma to share their data and become partners in research in order to drive new discoveries and improve understanding of this cancer. The new Leiomyosarcoma Project (LMS) joins another such patient-partnered rare cancer research initiative offered through Count Me In, the Osteosarcoma Project (OS), which also aims to accelerate the pace of cancer research by allowing patients to easily share their unique health data. 

The availability of patient data is especially crucial in rare cancers such as leiomyosarcoma and osteosarcoma as current therapies tend to be limited. Leiomyosarcoma is a smooth muscle soft tissue sarcoma that can arise from almost any site in the body. Osteosarcoma is a rare bone cancer that primarily impacts adolescents and young adults ages 10 to 30. Approximately 3,000 new patients are diagnosed with osteosarcoma or leiomyosarcoma in the United States each year. While the cancers are different, treatment options have not substantially progressed over the last 40 years. By providing researchers with patients’ data, Count Me In aims to stimulate learnings that will have a real impact and potentially unlock future therapies.

“The LMS and OS projects are an amazing opportunity for patient-partnered research in the rare tumor space. Bringing together patients, data, and the sarcoma provider community will create some of the largest genomic datasets ever to exist in these rare, and often stubborn tumors. We are also very excited to share research learnings with patients directly, as the project generates new data, and we look forward to learning together and innovating together,” said Suzanne George, clinical research director of the Sarcoma Center at Dana-Farber Cancer Institute and a clinical champion of the LMS Project for Count Me In. 

Count Me In engages cancer patients in the United States and Canada. Through the projects, participants share their medical records, biological samples, and personal cancer experiences. Count Me In then analyzes this data and generates databases of clinical, genomic, molecular, and patient-reported data that can be easily accessed by scientific and medical communities worldwide. All information is de-identified before it is ultimately released to researchers everywhere to drive impactful discoveries.

Patients can easily self-enroll through the projects’ online portals at any time. They receive a kit to provide saliva and/or blood samples and are invited to share their unique health information with researchers. 

"You do not have to be a philanthropist or even a researcher to contribute greatly to osteosarcoma research. With the Osteosarcoma Project, it is fast, simple, and free to affect change for osteosarcoma. All you need is the desire to use your powers for good to help your fellow osteosarcoma patients. Together, we can cause a cure, and the Osteosarcoma Project exemplifies that," said Ann Graham, an osteosarcoma survivor and executive director of MIB Agents, a leading pediatric osteosarcoma nonprofit organization.

Count Me In is studying additional cancer types with existing patient-partnered research projects that are focused on metastatic breast cancer, angiosarcoma, metastatic prostate cancer, esophageal and stomach cancer, primary brain tumors, colorectal cancer, and others. 

Count Me In has always kept patients informed about relevant discoveries they have enabled. Now osteosarcoma and leiomyosarcoma participants have the opportunity to directly receive information about what researchers have learned from studying their individual samples. 

“Living with a rare, aggressive cancer like leiomyosarcoma means dealing with a shocking lack of effective treatment options, and, too often, a dismal prognosis. LMS patients have the power to change that if we are engaged and empowered as collaborative partners in research. Count Me In’s commitment to the free sharing of research learnings with patients means we will have the opportunity to know how our data has been used and how the knowledge gained from it is directly impacting research and discovery. This unique collaboration between LMS patients and researchers, along with the open, transparent sharing of knowledge and insights, has the power to change the future course of LMS,” said Stacey Simpson Duke, an LMS patient and advocate. “We in the LMS community need researchers to see us, to share in our sense of urgency for groundbreaking discovery specific to LMS, and to partner with us in hope for a better future.”

For participants who opt in to receiving their shared learnings, Count Me In staff will send participants information on their own inherited and cancer-related genetic mutations. Sharing data with participants is a further step in direct engagement and provides patients with more benefits from participating in research. Count Me In plans to explore more opportunities to offer shared learnings across more cancer research projects in the future.

Count Me In’s Osteosarcoma and Leiomyosarcoma Projects are made possible by federal funding from the Cancer Moonshot, as part of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.