Patient-reported and patient-driven registries can be crucial in understanding rare diseases or cancers, driving research, and forming communities. Now, according to a recent press release, a new registry is forming, centered around ocular melanoma (OM). As part of the Melanoma Research Foundation’s CURE OM initiative, the organization launched the Virtual Information System to Improve Outcomes and Networks (VISION) Registry.

VISION Registry

In 2011, the Melanoma Research Foundation began the CURE OM initiative. Altogether, the initiative was designed to improve research and education around ocular melanoma. The Melanoma Research Foundation, and the CURE OM initiative, are also designed to help patients, caregivers, researchers, and medical professionals alike.

Now, the VISION Registry offers a new and more comprehensive approach to ocular melanoma education and research. It is the first registry of its kind and blends clinical data, patient-reported updates, and diagnostic and treatment information. Patients can report insights into the type of treatments received, the diagnostic process, quality of life (QOL), and their progression. By uniting all of this information in one place, all stakeholders can understand:

• What common experiences exist throughout various patient populations, potentially creating a link between unknown patterns
• Potential therapeutic targets
• How and where research can be improved
• A more comprehensive understanding of this melanoma
• Where the Melanoma Research Foundation and other organizations should focus support and tools
• Perhaps most importantly, what patients are looking for in terms of treatment, knowledge, and resources, and how to best offer that

After all, patients are experts in their conditions! While the data from the VISION Registry may be used in future medical research or clinical trials, the data will not be linked back to specific patients. Interested in learning more about the Registry? Click here.

If you are a patient with ocular melanoma and would like to get involved in the Registry, you may register here.

Ocular Melanoma

Ocular melanoma (OM) is a form of cancer which forms in melanin-producing cells within the eyes. Altogether, ocular melanoma is considered the second most common form of melanoma outside of cutaneous, which forms on the skin. Although ocular melanoma is considered somewhat common in terms of ocular cancer, it is still considered rare in the greater public discussion.

In patients with ocular melanoma, the cancer usually occurs in the iris, choroid, or ciliary body (all parts of the uvea). Most cases form in the choroid. Although the cancer begins in the eye, it can metastasize to other areas of the body. When ocular melanoma spreads, it often spreads to the liver. Risk factors of developing this cancer include being Caucasian, having light eyes or fair skin, UV exposure, older age, and specific genetic mutations.

In early stages, many patients do not display symptoms. For this reason, it is important to receive regular eye examinations. Doctors can find and diagnose melanoma during dilation. When symptoms do occur, they include:

• Blurred or double vision
• Growing dark spots on the iris
• Changes in pupil shape
• Vision loss
• Cataracts
• Astigmatism
• Sensation of flashes or dust specks in the eye
• Eye pain and redness
• Bulging eyes
• Glaucoma

Learn more about ocular melanoma.