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Osteosarcoma is a difficult cancer to have, a difficult cancer to treat, and a difficult cancer to understand. Osteosarcoma afflicts children, adults, pet dogs and even mice – a perfect storm to understand what drives this disease by looking at what is in common in all of these patients. Despite the need for better treatments and the despite efforts of the brightest and most innovative clinical trialists over the last 25 years, we remain unable to understand the key therapeutic targets of this disease (reviewed here). Moreover, can treatments be the same for osteosarcoma at the original site – or if it has spread to many places in the body? We need to move from a fragmented collection of osteosarcoma knowledge to a centralized one that is shared freely – and co-developed by patients and families.
We believe that a registry with DNA and RNA sequencing data for each tumor is needed to understand the context of each human patient, dog patient, cell line or mouse model (a genetically-engineered mouse, or a mouse bearing a patient’s tumor). In a way, this project is like the Rosetta Stone that had the same message written in 3 different languages, and which allowed scholars to translate Egyptian hieroglyphics to an easier-to-understand form of knowledge.
For osteosarcoma, the data in the proposed registry will be massive – but fortunately we are in the era of Big Data. Key data in the registry would include demographics, scans, microscope slide images, treatments, and outcomes of each patient. We will also include research-level data including DNA and RNA sequencing, and (where available) sensitivity of cell lines to drug panels. In many ways, this is far more than a registry: it is an owner’s manual of the key genetic aspects of the disease, what resources can be used to study each aspect*, and which genetic aspects are important to tumor cell survival. (We will also learn what genetic aspects are simply noise in the system).