Merkel Cell Carcinoma Patient Registry
Dr. Miller and Dr. Michael K. Wong co-chair a Project Data Sphere (PDS)-led Task Force of key opinion leaders who are working together to develop a multi-institutional registry for patients with Merkel Cell Carcinoma (MCC).
The Merkel Cell Carcinoma Tumor Registry is a collaborative effort that is collecting data on outcomes and events in MCC patients. Deliverables from the MCC Registry include: (i) improved patient risk stratification, (ii) identification of optimal sequence and combinations therapies, (iii) uncovering low-incidence toxicities, (iv) revelations about best practices, (v) novel hypotheses, and (vi) real-world data for drug development programs.
The MCC Task Force is composed of members from academic medical centers, the National Institutes of Health, the pharmaceutical industry and the U.S Food and Drug Administration. Project Data Sphere, LLC provides a secure, open-access data sharing platform and comprehensive support to optimize research performance and ensure rigorous and timely results. The Registry is currently in Part 1 of a two-stage Pilot project, in which we are collecting MCC outcomes at the MGH and the Dana-Farber/Harvard Cancer Center to clarify what data elements to collect, how to code the data and how to standardize the information collection in a way to facilitate analysis.