T hank you for your interest in the first-ever VISION Registry Data Report highlighting the power of the VISION Registry’s inaugural year. 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 ocular melanoma (OM) patients and their loved ones worldwide for their years of patience, dedication and support towards making the VISION Registry a reality. For years to come, VISION will benefit the entire OM community by deepening our understanding of the disease as well as providing opportunities for information exchange and community connection. We are excited and proud to offer a cutting-edge registry that captures the patient and caregiver voice and centers their experience and knowledge to advance research. Furthermore, VISION will continue to educate the OM community on clinical trials and other research initiatives and grow to enhance research and connection in the OM community. At its core, VISION seeks 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. This is foundational to the vision set forth by co-founder, OM patient, and my husband, Dr. Gregg Stracks, for the CURE OM initiative. The VISION Registry was co-developed by OM patients, caregivers, researchers and clinicians and is a tool that the entire OM 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. Dear VISION Community,
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 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. 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. I would also like to thank Ms. Jacqueline Kraska, CURE OM Research and Data Officer, for her efforts to build the Registry and compile the data presented in this report as well as the Global Vision Technologies team for their contributions in building the Registry and helping us realize our mission. T hank you for being a part of our vision — working together we will CURE OM because progress is power! With Gratitude and Hope,
Sara Selig, MD, MPH Co-Founder and Director, CURE OM
2022 VISION Registry Data Report
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