Data entered by patients into the VISION registry will be stored on a secure online server hosted by Global Vision Technologies (GVT), a registry platform provider that meets US and European data protection regulations. GVT will ensure that special credentials are required to enter the site and will perform regular maintenance of the server, including routers, firewalls, and other software and/or services to protect the platform from hackers, viruses or other malicious attacks. GVT will back up the patient data nightly and will transfer information backups to secure off-site storage monthly. GVT is not only responsible for the registry’s security and maintenance, but also for addressing IT issues and developing further registry features required over time. Because the VISION registry will be 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.
Data will be regularly managed for safety and quality by the VISION registry team and only de-identified reports will be produced to conduct study analysis by the Sponsor (the Melanoma Research Foundation) and its collaborators. Results of the reported data will be summarized and shared directly with participants, the patient community and all invested parties. The MRF is the guardian of all registry data, and GVT will keep confidential any registry data and will not disclose any such data to a third party without explicit written permission by the MRF.
About the VISION Registry’s Sponsor (MRF) and the 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 million in ocular melanoma research and pioneered international collaborations, groundbreaking scientific initiatives and innovative patient support resources. Central to the success of the VISION registry is a generous financial gift from Massachusetts General Hospital Cancer Center to fund the launch and multi-year maintenance of the VISION registry. The MRF gratefully welcomes the partnership in this historic and critically needed research.
VISION Registry is reviewed and monitored by Sterling IRB (Institutional Review Board) to protect the rights and welfare of research participants. For further information please go to: