Count Me In, a non-profit research initiative, 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.
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.
