News & Press
Melanoma Research Foundation Launches Historic Patient-Reported Ocular Melanoma Registry
The MRF’s CURE Ocular Melanoma (CURE OM) initiative announces the first-of-its-kind patient-reported registry to accelerate the pace of research and treatment development, transforming the scientific understanding of this rare disease.
WASHINGTON, DC, May 10 – The Melanoma Research Foundation’s (MRF) CURE OM initiative today announces the launch of the Virtual Information System to Improve Outcomes and Networks (VISION) Registry, a first of its kind patient-reported, patient-driven ocular melanoma (OM) registry. A patient registry is a critical tool to advance medical research, especially for a rare disease where data collection and research collaboration have been historically challenging. In contrast to clinician-driven data registries, the VISION Registry is unique in that it is patient powered and reported, and it unites multiple academic centers, research institutions and partner organizations from around the world. In addition to collecting strictly clinical data, patients and caregivers can regularly submit updates that present a holistic picture of their diagnosis, various treatments, outcomes, lifestyle, quality of life and geographic details. Recording these additional data segments may reveal previously unseen patterns, commonalities, potential causes and new treatment targets. This will create new collaborative opportunities with leading medical and academic partners, reveal a greater understanding of the disease and unlock much-needed breakthroughs in OM research and treatment development. It will also allow CURE OM and its partners to better understand patient preferences and which support resources are most needed.
“The VISION Registry will accelerate our own research efforts and also allow for new collaborations that wouldn’t have been possible before,” said Marlana Orloff, MD, Medical Oncologist at Thomas Jefferson University Hospital and founding member of the CURE OM VISION Registry Steering Committee. “OM patients have always been the most important member of their own treatment team, and now they are impacting life-saving research all over the world.”
Data entered into the registry will be de-identified and digitally stored in a highly secure online database that eligible researchers can access for future studies, research collaborations and clinical trials. Placing the highest priority on data security and ease of use, the VISION Registry was custom built specifically for the OM community on the Global Vision Technologies (GVT) platform with step-by-step guidance from an interdisciplinary group of OM experts as well as OM patients and caregivers on the CURE OM VISION Registry Steering Committee. GVT, the leading provider of cloud-based, HIPAA compliant patient registry software called ClinicalPURSUIT, will manage the data security of the registry.
The VISION Registry traces its roots to a meeting of patients and researchers hosted by CURE OM, where participants strongly identified an inter-institutional registry as the most pressing need in the OM community. “Alongside dedicated researchers and physicians working towards new treatment breakthroughs, OM patients and caregivers have always been vital partners in identifying priorities and advancing our understanding of this disease,” said Sara Selig, MD, MPH, Co-Founder and Director of the CURE OM initiative. “After witnessing their commitment to the development and launch of the VISION Registry, I have never been more confident that OM patients and those who love them will lead us to a cure.”
To learn more about the VISION Registry and how your experience as an OM patient or caregiver could lead to a cure, visit www.visionregistry.org.
In addition to the MRF’s 25th Anniversary in 2021, this year CURE OM celebrates 10 years of service to the ocular melanoma community. Through programs like the VISION Registry, the MRF and its CURE OM initiative are dedicated to advancing research to develop better treatments and, one day, a cure for all forms of melanoma. In celebration of Melanoma Awareness Month and the anniversary year, please consider a tax-deductible gift today.