ASCO has submitted comments to the National Institutes of Health (NIH) in response to a Request for Information (RFI) on data sharing and management (NOT-OD-17-015).
In the comment letter, ASCO expressed support for the NIH’s efforts to develop a framework and strategies for data sharing and data management, recognizing the essential role it plays in expediting the dissemination of research results and best practices to improve public health.
“ASCO urges the NIH to develop a comprehensive data management and sharing framework that reflects the principles of responsible sharing of data in a timely way and that maximizes the benefits to research, care, and the general public,” wrote ASCO President Daniel F. Hayes, MD, FACP, FASCO.
In the development of any data management and sharing strategies, ASCO strongly urged the NIH to consider the need for additional funding and to look for ways to reconcile various data sharing policies that have emerged from several offices within the agency by harmonizing its policy with other requirements researchers face.
ASCO’s letter outlined these points in the context of its goals and strategies in developing its two data sharing initiatives – the rapid learning system, CancerLinQ® , and the Targeted Agent and Profiling Utilization Registry (TAPUR), the society’s first clinical trial.
“The development of our rapid learning health care system, CancerLinQ, will allow clinicians to analyze aggregated, real-world cancer clinical data from electronic health records (EHR). Clinical trials like ASCO’s TAPUR Study include multiple therapeutic options and operate across all cancer types. The TAPUR Study leverages rapid advances in tumor genomic sequencing and broadening availability of such testing to facilitate participation by cancer patients with all cancer types. The goals of these initiatives are to drive better cancer diagnosis and treatment,” said Hayes.