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 (PRWEB) MAY 10, 2021
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 http://www.visionregistry.org.
About Ocular Melanoma
Ocular melanoma (OM) is the most common type of eye cancer in adults and the second most common form of melanoma, diagnosed in approximately 2,000 people each year in the United States. Like other melanomas, it begins in melanocytes – the cells that produce the pigment melanin that colors the skin, hair and eyes, as well as forms moles. In its early stages, OM can often have few or no noticeable symptoms and is most often discovered during a routine dilated eye exam, making this exam an important part of a yearly wellness routine. Approximately half of OM patients will have their disease spread to other areas of the body, most often the liver. There are currently no FDA-approved treatments for metastatic OM, highlighting the critical need for new advances in research.
About the MRF and its CURE OM Initiative
The Melanoma Research Foundation (MRF) is the largest independent organization devoted to melanoma. Committed to the support of medical research in finding effective treatments and eventually a cure for all forms of melanoma, the MRF also educates patients and physicians about prevention, diagnosis and the treatment of melanoma. The CURE Ocular Melanoma (CURE OM) initiative was founded in 2011 to increase awareness, education and research funding for ocular melanoma. To date, the MRF’s CURE OM initiative has funded over $2.1 million in ocular melanoma research and pioneered international collaborations, groundbreaking scientific initiatives and innovative patient support resources. The MRF’s website is the premier source for melanoma information seekers. More information is available at http://www.melanoma.org and http://www.cureom.org. Follow CURE OM on Facebook and Twitter.
About the VISION Registry
Created by the Melanoma Research Foundation’s CURE OM initiative, the Virtual Information System to Improve Outcomes and Networks (VISION) Registry is a first-of-its-kind patient reported, patient powered registry for ocular melanoma patients, caregivers, researchers and physicians. When a patient reported registry was identified as a critical need in the OM community, the MRF’s CURE OM initiative committed to leading the project with the consultation and strong support of the VISION Registry Steering Committee, CURE OM community and leading OM researchers, physicians and experts from across the world. The VISION Registry launched in May 2021.