A Study to Track Uveal Melanoma Over Time and Understand How It Develops

In Plain English

This is not a treatment trial—it's a tracking study. Researchers are building a national registry (a detailed database) to follow uveal melanoma patients over months and years to understand how the disease progresses, what happens after treatment, and when it might come back. Think of it like a long-term health journal that many hospitals will contribute to, so doctors can learn patterns they've never seen before. If you join, you'll be asked to share your medical information—your diagnosis, treatments you receive, imaging scans, and how you're doing over time. This information stays in the registry and helps researchers understand the natural history of uveal melanoma (how the disease naturally behaves without interference). Right now, there's no major study like this happening, so this data is really needed. You're not receiving a new drug or experimental treatment in this study. Instead, you'll continue your regular care with your eye cancer doctors and medical oncologists, and they'll report your progress to the registry. This helps future patients because doctors will have real-world information about what to expect and how to better manage the disease.

What This Trial Does

The overall objective of this proposal is to develop and utilize a multicenter UM registry that will, in a longitudinal fashion, capture prospective data in order to characterize the natural history of UM and provide data that will be used to support the development of novel therapies for this disease. The care of patients with UM requires a multi-disciplinary team of physicians that commonly requires the involvement of both radiation oncology and interventional radiology, and is typically directed by an ophthalmologic oncologist at time of initial diagnosis of primary disease. Overall management is transitioned to a medical oncologist when distant recurrence is identified. In the case that a patient presents with metastasis at the time of diagnosis, a medical oncologist typically directs overall management. The management of surveillance for the development of metastasis following the treatment of primary disease is variable and, if performed at all, is managed by either an ophthalmologic oncologist or medical oncologist. Thus, the successful development of a registry that aims to capture the data regarding the full natural history of UM requires a collaborative effort including leaders from both the UM ophthalmologic oncology and medical oncology fields. To this end, the investigators have built an initial consortium of key ophthalmologic oncology and medical oncology leaders from multiple major UM centers in the United States.

How It Works

Uveal melanoma (UM) is the most common primary intraocular malignancy in adults, accounting for 85% to 95% of ocular melanoma cases. However, UM represents only about 3% to 5% of all melanomas in the United States (US). UM most commonly arises from choroidal melanocytes (85-90%), but can also arise from the iris (3-5%) and ciliary body (5-8%). The median age of diagnosis is approximately 62; however, the peak range for diagnosis is between 70 and 79. Males have a 30% greater incidence than females. A variety of putative risk factors have been identified, including the presence of light eyes, fair skin, an inability to tan, ocular melanocytosis, dysplastic nevus syndrome, and germline BRCA1-associated protein 1 (BAP1) mutations. Importantly, there are no recent or on-going multi-center natural history studies being conducted in this disease, and this effort is the only one to be launched with the goal of capturing the complete course of this disease, from diagnosis, initial management, surveillance, and treatment of recurrent disease in a national and international setting. This registry is especially important in providing such needed data.

Who Can Join