To RCT or Not to RCT: How to Change Practice for Rare Cancers?

open access

 ..........To take medicine-based evidence in oncology to the next level, larger, comprehensive registries and big data are needed desperately, with funding and support not only from government granting agencies and oncology societies but also from foundation, private sector, and industry sources. In this regard, the American Society for Radiation Oncology and the American Association of Neurologic Surgeons joined forces with corporate partners to develop a stereotactic radiosurgery registry for brain tumors and benign disorders.¹⁷ The ASCO-led development of CancerLinQ, a health information technology platform, will house a massive web of real-world cancer care data and uncover patterns that should lead to improved quality of care.¹⁸ Industry-led consortia are also now bringing together centers to share data for pooled analyses,¹⁹ and Google is supporting the Flatiron software platform to help connect cancer centers.²⁰ Provided that issues of treatment quality/compliance, intellectual property, data access, and academic freedom can be transparently addressed, all of these initiatives hold great potential to influence our knowledge of how treatments either benefit or harm patients outside of clinical trials. Given that this represents more than 98% of our patients,²¹ being able to tap into such data would be helpful indeed, especially for rare cancers such as IHC