The CURE OM VISION platform is a groundbreaking, patient-powered research project that began at the CURE OM Patient and Caregiver symposium in 2016. Over the years, ocular melanoma experts, OM community stakeholders, and key opinion leaders have collaborated to develop the data set and establish best practices. Launched in the United States in May 2021, the registry quickly expanded to participants worldwide, with ongoing support ensuring its continued success.

Despite significant strides, the medical community still faces challenges in accessing the comprehensive information needed to improve OM awareness, diagnostics, treatments, and outcomes. Experts agree that a natural history study using a patient-reported registry is the best approach to address these challenges. By harmonizing data collection from patients globally, this registry will allow advocacy organizations and researchers to access and analyze data from a single source, enhancing knowledge and understanding. As more data is reported, the registry can reveal disease patterns, anomalies, and new findings that may eventually lead to a cure.

What is a Patient Registry?

A patient registry is a collection of information about a group of patients who share a condition or experience, submitted confidentially by patients or their representatives. The data is securely stored in an online database and used to produce research reports that can be shared with participants and researchers.

The purposes of a patient registry include:

• Learning about a disease or condition

• Supporting education and timely diagnosis

• Developing therapies and research hypotheses

• Improving healthcare quality

• Informing and educating the community

• Understanding patient preferences and quality of life

• Bringing together the patient community and research collaborators

• Ensuring patient involvement in research and treatment advances

What Will VISION Accomplish?

The VISION registry, operating under a rigorous Institutional Review Board (IRB)-approved protocol and a data-secure platform, is set to revolutionize our understanding of ocular melanoma. By capturing comprehensive information on genetics, disease characteristics, environment, treatments, physical outcomes, and quality of life, we are building a powerful resource that will drive groundbreaking research and innovations in patient care.

This registry will provide critical insights that shape policies, align patient care with their preferences, and establish new standards of care. Every piece of data is meticulously monitored to ensure the highest safety and quality standards, ensuring that our findings are robust and reliable. The outcomes will be shared with the ocular melanoma community and key stakeholders, sparking advancements that will transform lives.

By supporting VISION, you are not just funding a registry; you are fueling a movement towards a future where ocular melanoma is better understood, more effectively treated, and ultimately cured. Your contribution will directly impact the speed and scope of these breakthroughs, making a tangible difference in the lives of patients worldwide.

Why We Need Your Help

To sustain and expand this critical VISION registry, we need to raise $50,000. This funding will allow us to continue collecting and analyzing vital data on ocular melanoma, supporting ongoing research, and ultimately moving closer to discovering more effective treatments and a cure. Each year, approximately 2,000 adults in the U.S. are diagnosed with this aggressive and rapidly progressing disease. Your tax-deductible donation will directly impact our ability to maintain and grow this essential resource.

With your support, we can enhance patient care by understanding disease demographics, improving early detection, ensuring accurate diagnoses, and promoting evidence-based treatment decisions. Your contribution also fosters collaboration between patients, clinicians, and researchers, leading to discoveries that improve patient outcomes and quality of life.

Every dollar makes a difference. Your donation, no matter the size, helps keep the VISION registry active, ensuring we can gather the critical information needed to save lives. Join us in this vital effort and be part of the solution for those affected by ocular melanoma.

Thank you for your continued support and dedication to the fight against ocular melanoma.