Share with others! EyeMelanoma.org quickly gets you to the info & resources you need.
Share with others! EyeMelanoma.org quickly gets you to the info & resources you need.
"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"
The OMNi academic registry of patients aims to "capture prospective data in order to characterize the natural history of uveal melanoma and provide data that will be used to support the development of novel therapies for this disease" [by] "capturing the complete course of this disease, from diagnosis, initial management, surveillance, and treatment of recurrent disease in a national and international setting."
Estimated study completion date: July 2026. Sponsor: Columbia University.
Locations in the United States (4):
— Massachusetts General Hospital
— MD Anderson Cancer Center
— Memorial Sloan Kettering Cancer Center
— Thomas Jefferson University Hospital
Other participating centers: Australia (8), Canada (1), Germany (1), and the UK (3).
Also: Informational video about the OMNi registry by Dr. Joseph Sacco (November 2020; 15-minute video). October 2024 OMNi poster presentation at Society for Melanoma Research International Congress.
As explained by the National Cancer Institute:
"Clinical trials are research studies that test how well new medical approaches work in people. Cancer clinical trials test new treatments or new ways of using existing treatments."
"Treatment trials are designed to answers questions such as:
— What is a safe dose of the treatment under study?
— How should the treatment be given?
— Does the treatment help people with cancer live longer than current treatment?
— Can the study treatment shrink tumors or slow their growth and spread?
— What are the treatment's side effects?
— Does the study treatment allow for a better quality of life with fewer side effects?
— Does the treatment help delay the return of the cancer? "
CLICK HERE to go to EyeMelanoma.org's webpage on Educational and Support Resources for ClinicalTrials.gov Database Searches.
"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.):
"Pattern.org enables cancer patients to directly donate their tumor tissue and medical data to research. Once you enroll, Pattern.org will link you to a specific research project studying your cancer. We are requesting only excess tissue from your surgery that isn’t needed for your medical care. Pattern.org will get in touch with your doctor and surgical institution to provide instructions for what is needed to fulfill your request for donation. There is no cost to patients to contribute tissue to research through Pattern.org."
Also: Barbara Van Hare of Pattern.org and an OM patient both speak about the Pattern.org project (March 2021; 20-minute video).
New information added to this webpage: March 14, 2025
Links to all external sites re-verified on this webpage: March 14, 2025
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