T hank you for your interest in the VISION Platform (VISION)! I am honored to present VISION’s second data report to the ocular melanoma (OM) community. On behalf of the Melanoma Research Foundation’s (MRF) CURE OM team, the VISION Steering Committee and our close collaborators, I would like to thank OM patients and their loved ones worldwide for their dedication and support towards making the VISION Registry a reality and for helping to develop VISION into the robust platform it is becoming. For years to come, VISION will benefit the entire OM community by deepening our understanding of the disease, advancing research and providing opportunities for information exchange and community connection. This year has been a year of growth for VISION. We have significantly increased the number of patients who have enrolled in the Registry from 327 to 421. After a year of receiving helpful input and feedback from the OM patient, caregiver and clinician/research communities, we have made changes to VISION to allow more comprehensive research opportunities and additional support for patients and families. We have broadened the VISION Registry to include additional questions and timepoints to allow for more robust data collection and analysis. We have also expanded the VISION Registry into the full VISION Platform, including the newly launched VISION Discussion Forum and the VISION Clinical Trials Connector Tool, and the Platform continues to grow. We hope these tools provide additional support to patients when they need them the most. We are proud of the co-designed and co-developed cutting-edge Registry that captures the patient and caregiver voice, and centers their experience and knowledge to advance research as well as the growing platform that provides increasing opportunities for education and connection. VISION aims to connect and empower the OM community and support the best patient care, quality of life and improved patient outcomes through collaboration and centralization of data and resources. The VISION Registry was co-developed by OM patients, caregivers, researchers and clinicians and is a tool that the entire OM community Dear Ocular Melanoma Community,
can access globally anywhere there is internet. Participants sign an online consent form and provide their own personal and medical information into the database. Patient-entered data is stored on a secure online server hosted by Global Vision Technologies (GVT), a registry platform provider that upholds U.S. and European data protection regulations. The VISION Registry is reviewed and monitored by an Institutional Review Board (IRB) to protect the rights and welfare of research participants. Because the VISION Registry is fundamentally conducting a natural history study that investigates the lifetime of the disease, it will be expected to run for many years and have continual updates that support research and technological enhancements over time. While we have come a long way, we still have a long journey ahead to uncover answers, develop more effective treatments and find a cure. I feel honored to be the principal investigator of the Registry and to work with such an innovative, creative and dedicated community. Furthermore, I look forward to continuing together on this pathway of discovery to advance patient care and find a cure and build community and connection along the way. In closing, I would like to thank the amazing team working to support VISION including the patients and caregivers who are actively participating and providing input and feedback, the VISION Steering Committee, our funders and the dedicated MRF CURE OM team. This is a strong team effort! T hank you for being a part of our vision — working together we will CURE OM! With Gratitude and Hope,
Sara Selig, MD, MPH Co-Founder and Director, CURE OM
2023 VISION Registry Data Report
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