The CAVATICA Data Commons and its partnering organizations, foundations, and patients seek to democratize discovery through scalable access and collaborative use of biomedical data in support of new cures for pediatric cancers and rare diseases. We recognize that in partnering with patients and their families through their consented participation in research, organizations and their associated clinicians and researchers must be conscientiously responsible to study participants for the proper stewardship of their data. Particularly in the context of pediatric cancers and rare disease, where patient populations are vulnerable and data are scarce, such stewardship requires: 1) cognizance of appropriate privacy, compliance and ethical guidelines, 2) a dedication to proper curation, harmonization, integration, and data quality controls, and 3) an unwavering commitment to rapid, transparent, and broad data dissemination to as wide an audience of the research community as possible in ways that support collaborative discovery of new and improved therapies. Access to data should be provided to the entire healthcare community independent of any perceived threat to primacy of discovery and should include dissemination to academic, governmental, and industry-based researchers. In all our efforts we respect the legacy and sacrifice of study participants and their dedication to discovery on behalf of those who will come long after their own individual battles may have concluded. As such datasets must be empowered in ways that ensure they are discoverable and available for continuous re-use either individually, or in combination with any newly generated datasets. With these commitments in mind and with the recognition that research is best served when data are de-siloed and are provided without embargo or boundary, CAVATICA and its partners continuously seek to find ways to collaborate, share, interoperate, and connect with any and all other data platforms in order to empower data across diseases and ages across the United States and throughout the world.
In support of this vision, the CAVATICA Data Commons is hosting Project OPEN, a discovery-ecosystem-building initiative dedicated to revolutionize disease-specific projects. OPEN projects focus on developing an ecosystem for data generation, curation, and integration by disease-focused communities comprised of consortia, foundations, researchers, clinicians, healthcare systems, commercial partners, payers, and, most importantly, patients and their families. Such an ecosystem of centralized efforts in CAVATICA seek not only to build and empower a disease-specific community in its own right, but to provide an intersecting network of projects that fully empower the harnessing of discovery across disease subtypes and/or disciplines no matter how rare—because when it comes to children, the rare is all too common.
Help us launch a new paradigm for discovery on behalf of children and rare diseases and become a Cavatica Data Commons Member and join our team or launch your own Project Open!