News & Press

An Exciting Update on VISION: the CURE OM Patient-Reported Registry

This week, the MRF announced a transformational new partnership with Massachusetts General Hospital Cancer Center (MGHCC) to advance the development and launch of VISION, the first ever patient-powered and patient-reported ocular melanoma registry! Central to this partnership is a generous financial gift to fund the launch and multi-year maintenance of the registry project. The MRF gratefully welcomes Massachusetts General Hospital Cancer Center as a foundational partner in this historic and critically needed research.

A patient registry is a critical tool to advance medical research, especially for a rare disease. Hosted by Global Vision Technologies’ ClinicalPURSUIT registry platform, the VISION registry is unique in that it is patient powered and reported. In addition to strictly clinical data, patients and caregivers can regularly submit updates that present a holistic picture of their diagnosis, various treatments, outcomes, lifestyle and geographic details. It will also show preferences and other information that may reveal previously unseen patterns, commonalities, potential causes and new treatment targets. This will offer new collaborative opportunities with leading medical and academic partners, reveal a greater understanding of the rare disease and unlock much-needed breakthroughs in OM research and treatment development. “CURE OM’s VISION registry represents a historic opportunity for research collaboration to accelerate the pace of scientific discovery to benefit patients,” said Marlana Orloff, MD, Medical Oncologist at Thomas Jefferson University Hospital and founding member of the CURE OM Patient Registry Steering Committee.

Progress on the VISION registry is accelerating rapidly, and it is expected to launch in the summer of 2020. Additional details will soon follow about the latest progress, how to get involved and more. For further information, see the official press release, visit www.ocularmelanomaregistry.org or email cureom@melanoma.org.