A few years ago, President Barak Obama call on Vice President Joe Biden to lead a national ‘Moonshot’ initiative to eliminate cancer. The aim was to accelerate cancer research and to make more therapies available to more patients, while also improving our ability to prevent cancer and detect it at an early stage through individual projects. Though the Biden Cancer Initiative has suspended operations indefinitely, the projects initiated by the foundation continue.
As part of the initiative the National Institutes of Health (NIH) hosted a Symposium on Personal Control of Genomic Data for Research at the end of September. They shared activities of how they directly engage rare tumor communities, of which MyPART (My Pediatric and Adult Rare Tumor Network) was featured. The Life Raft Group is pleased to be a new partner in the MyPART Network because advocates are essential partners in the design, conduct, and governance in the research that benefits our community. One of the big takeaways from this conference was that individuals should have control over how/if their data is used for research. The LRG has been a leader in the pursuit of this important mandate for quite some time as we have been conducting a research study with our patient registry and tissue bank for many years.
We look forward to continuing partnerships with the advocate and scientific community on data with the goal of enhancing the survival of our patient community.