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Patient-partnered initiative will enable anyone in the USA and Canada affected by osteosarcoma to participate
Count Me In has launched the Osteosarcoma Project (OSproject.org), a patient-partnered effort that enables people in the USA and Canada who have been affected by osteosarcoma to accelerate research.
The OSproject will partner with patients and parents/guardians through social media and advocacy groups in order to generate data that represents the spectrum of people affected by this disease. De-identified genomic, clinical, and patient-reported data from the project will be made freely available to the global biomedical community.
Count Me In is a 501(c)3 nonprofit research initiative on a mission to make every patient's experience count in the effort to understand and overcome cancer. Founded in 2018 by Emerson Collective, Broad Institute of MIT and Harvard, and Dana-Farber Cancer Institute, Count Me In engages and empowers patients to participate in cancer research by donating medical records, genomic data, and tumor samples for study.
Osteosarcoma is the most common malignant primary bone tumor and yet it is a rare disease, with approximately 800 to 900 new cases per year in the United States, according to statistics from the American Cancer Society. The ten-year overall survival rate of 60% has not changed in over 30 years, and treatment options used for osteosarcoma are associated with significant toxicity and long-term side effects. Insights leading to new approaches have been limited, and many key questions need to be answered in order to better understand this disease.
Osteosarcoma primarily impacts adolescents and young adults ages 10 to 30. The OSproject will be the first Count Me In project to enroll pediatric patients and will enable patients of any age to join. “Collaboration between patients, medical professionals, and researchers is paramount to those who have and will suffer from osteosarcoma as we seek to provide better outcomes,” said Ryan Kennington, Project Advisory Council member.
Easy to enroll, built with patients
Patients of any age diagnosed with osteosarcoma can join the project. To participate, patients first fill out an online research consent form, which asks for permission to collect samples and to request copies of their medical records. After completing the consent, patients have the option to complete a survey covering demographic information and cancer history.
The study team takes it from there, obtaining copies of medical records and samples so that researchers can compare the patient’s genetic information with tumor DNA, linking that information with the patient’s clinical story. Individuals who have lost their child or a loved one to osteosarcoma can complete a survey to describe their loved one’s experience with osteosarcoma, giving researchers unique insights into this cancer and the power to inform future directions.
The project will generate de-identified genomic, clinical, and patient-reported data that will be shared as a comprehensive dataset with the entire research community in order to accelerate the development of future therapies. The data will be made available to researchers globally via scientific web portals so that they can access and learn from it, and as a result, fuel their research programs and accelerate discoveries in cancer research. The team will release new batches of data on a regular basis.
The OSproject was built with input from patients, caregivers, clinicians, and scientists in the osteosarcoma community.
All Count Me In projects share a core commitment of partnering closely with patients to speed both drug discovery and biological understanding of cancer. “The OSproject puts the power to effect change in osteosarcoma in the patient’s hands - our hands! This project allows us an impactful way to inform research, thus improving our chances for kinder treatments and ultimately greater hope for more survivors of this disease,” said Ann Graham, Project Advisory Council member.
The OSproject is proud to have Because of Daniel, MIB Agents, The Osteosarcoma Collaborative, the QuadW Foundation, the Zach Sobiech Osteosarcoma Fund, and Target Cancer Foundation as advocacy partners.
Input from scientists and clinicians was gathered to create surveys that will enable the OSproject to better understand patients’ experience with osteosarcoma. “As an oncologist who treats patients with osteosarcoma and a researcher who studies osteosarcoma, I am excited to see the OSproject launch,” said Katherine Janeway, MD, MMSc, Associate Professor of Pediatrics at Harvard Medical School, Senior Physician at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Director of Clinical Genomics at Dana-Farber Cancer Institute, and a member of the OSproject's Scientific Advisory Council. “It is just the type of osteosarcoma community engagement needed to drive science and treatment forward.”
To learn more, visit JoinCountMeIn.org.