Sharing Clinical and Genomic Data on Cancer — The Need for Global Solutions

The Cancer Moonshot initiative has emphasized the importance of breaking down data silos to create a comprehensive and effective “cancer knowledge network” that would accelerate the combining of genomic, epidemiologic, and clinical information to improve patient outcomes. The real value of genomic data will be realized only when they are linked to high-quality, longitudinal, computationally amenable clinical information, allowing researchers to identify precise genotype–phenotype associations. If we don’t concentrate our efforts (and dedicate substantial resources) to robustly improve data sharing, we risk undermining precision oncology’s capacity to deliver substantive advances for people with cancer. Patients are demanding that their data be shared, and funding agencies are specifying that institutions provide broad access to research-generated information. Cancer doesn’t respect national borders, so we need effective global strategies for sharing cancer-related data. But getting to that point presents various challenges.

Cancer Core Europe involves six premier cancer centers in various European countries and is based on the model of a virtual cancer institute. The centers share a harmonized data infrastructure and conduct cooperative biomarker-driven clinical trials in a catchment population of more than 60,000 patients — a model that supports clinical utility.

NewsJohn Rowell