"The INSIGHT Registry is a powerful opportunity for individuals 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.
Also: Dr. Armin Afshar and Dr. Bertil Damato speak about the INSIGHT registry (October 2021; 45-minute video).
"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.
Also: Dr. Richard Carvajal and Dr. Sara Selig speak about the VISION registry (November 2021; 60-minute video).
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."
Initial consortium in the U.S. includes Columbia University Cancer Center, Massachusetts General Hospital Cancer Center, MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center, and Thomas Jefferson University Hospital. There are also initial participating centers in the UK and Australia.
Also: Informational video about the OMNI registry by Dr. Joseph Sacco (November 2020; 15-minute video).
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).
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