"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 (NORD).
Also: Dr. Janet Woodcock speaks about the NORD Registry Program (October 2018; 7-minute video).
"The VISION Registry unites patients, caregivers, researchers, and physicians across the globe to share data, accelerate progress, and advance towards a cure. [...] All OM patients and caregivers are eligible and encouraged to participate." Partners: Melanoma Research Foundation's CURE OM Initiative, Massachusetts General Hospital Cancer Center, and Global Vision Technologies.
Also: Dr. Richard Carvajal, Chad Kimbler, Dr. Marlana Orloff, and George Ritacco speak about the CURE OM Registry (November 2020; 60-minute video).
The OMNI academic registry of patients "aims to capture the data regarding the full natural history of uveal melanoma." [...] To this end, the investigators have built an initial consortium." [Initial participating centers in the US: Columbia University Cancer Center, Massachusetts General Hospital Cancer Center, MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center, Thomas Jefferson University Hospital; Plus initial participating centers in UK and Australia).
Also: Informational video about OMNI by Dr. Joseph Sacco; November 2020; 13-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; 18-minute video).
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