Rare Daily Staff

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 joins the Osteosarcoma Project, another such patient-partnered rare cancer research initiative offered through Count Me In that seeks to accelerate the pace of cancer research by allowing patients to easily share their health data. Federal funding from the Cancer Moonshot, as part of the Participant Engagement and Cancer Genome Sequencing Network, is supporting both projects.

Current therapies for rare cancers are limited, which makes the availability of patient data crucial for conditions such as leiomyosarcoma and osteosarcoma.

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.

“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,” said Suzanne George, clinical research director of the Sarcoma Center at Dana-Farber Cancer Institute and a clinical champion of the Leiomyosarcoma Project for Count Me In. She said Count Me In will share research learnings with patients directly as the project generates new data.

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 can share their unique health information with researchers. 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.

“You do not have to be a philanthropist or even a researcher to contribute greatly to osteosarcoma research,” said Ann Graham, an osteosarcoma survivor and executive director of MIB Agents, a leading pediatric osteosarcoma nonprofit organization. “With the Osteosarcoma Project, it is fast, simple, and free to affect change for osteosarcoma.”

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