OCULAR MELANOMA RESEARCH OPPORTUNITIES

"The INSIGHT Registry is a powerful opportunity for individuals [across the globe] with ocular melanoma and their family members to contribute directly to research that will enhance our understanding of ocular melanoma." Partners: A Cure In Sight, University of California San Francisco Beckman Eye Center, and the National Organization for Rare Disorders.

Click on "learn more" below to access registry website.

Also: 

Melody Burchett, Hanna Hulick, and OM patient Kevin discuss the INSIGHT Registry (September 2023; 50-minute video presentation).

"The VISION Registry unites patients, caregivers, researchers, and physicians across the globe to share data, accelerate progress, and advance towards a cure." Partners: Melanoma Research Foundation's CURE OM Initiative, Massachusetts General Hospital Cancer Center, and Global Vision Technologies.

Click on "learn more" below to access registry website.

Also:

Dr. Sara Selig and OM patient Neal discuss the VISION Patient Registry (May 2024, 45-minute video presentation begins at 9:00 time stamp).

CURE OM's "2023 VISION Data Registry Report"

"A Cure in Sight Ocular Melanoma and HonorHealth Research Institute Melanoma Clinic announce their collaboration for a Biorepository of Uveal Melanoma tissue samples to be stored for future translational studies. [...] ACIS and the HonorHealth Research Institute are working together to develop a multisite biobank of metastatic uveal samples to be used in studies that will lead to a better understanding of the disease. Samples will be available to non-profit researchers based on application submission and approval from a scientific and biobank oversight committee. [...] Samples will be collected from patients at participating biobank sites, shipped to scientists at the HonorHealth Research Institute for processing, and stored in the biobank until use. It is anticipated that sample collection and storage will start in the second quarter of 2023. Samples will be available for use starting in 2024." There have been no posted updates since this initial announcement. For information on this project, contact A Cure in Sight.

Ocular Melanoma Tumor Tissue Donations for Cancer Research (U.S.):

Uveal Melanoma is listed as one of the "cancer types that are eligible for tissue donation with Pattern.org."

"Pattern.org [RCRF's tissue donation website] enables cancer patients to donate their tumor tissue to researchers directly, even those not at the treating institution. We get your tissue to labs for immediate use rather than storing that tissue for the future. Not all hospitals offer tissue donation. With Pattern.org, you can donate your tissue with any provider at any hospital at no cost to you and it won’t affect your care."

Also: Barbara Van Hare of Pattern.org and an OM patient both speak about the Pattern.org initiative (March 2021; 20-minute video).