News & Press
Ocular Melanoma – FDA Listening Session Report
May 29, 2020 – On January 27, 2020, the Melanoma Research Foundation’s (MRF) CURE OM initiative led by Senior Advocacy Officer Cassie Beisel conducted a first of its kind Patient-Led Ocular Melanoma Listening Session at the U.S. Food and Drug Administration (FDA). Patients, caregivers and medical professionals met with eighteen FDA leaders to share their stories and discuss the needs of the community. Their stories told focused on the lack of standard of care, misdiagnosis, the need for single arm clinical trials, financial toxicity of the disease and the toll it takes on both patients and caregivers who have been impacted by this orphaned disease. Eleven individuals met in person with the FDA and four from the community phoned in to share their journeys. In direct response to the patients call for action regarding their commonality of misdiagnosis, the FDA’s Center for Devices and Radiological Health (CDHR) shared information about the Collaborative Community for Ophthalmic Imaging (CCOI). Since then, the MRF has connected with the CCOI and is proud to have been invited to participate as a patient advocacy voice for the ocular melanoma community. The hope is to advance earlier detection of OM through AI interpretation.