Melanoma Research Alliance’s RARE Registry for Acral & Mucosal Melanoma Surpasses Industry-Leading 100-Patient Milestone
Source: Yahoo! Finance, July 2023
WASHINGTON, July 10, 2023 /PRNewswire/ — The Melanoma Research Alliance (MRA), the largest non-profit funder of melanoma research, today announced that the RARE Registry for acral and mucosal melanoma has officially surpassed 100 patients, making it the largest registry of its kind in the world and marking an important milestone in advancing cutting-edge research for these rare and difficult-to-treat melanoma subtypes.
The MRA began work in 2020 to launch RARE, a direct-to-patient interactive portal, to advance its mission of accelerating treatment options, supporting cutting-edge research and ultimately finding a cure for all types of melanomas.
While roughly 90% of melanomas form on sun-exposed skin, rare melanoma subtypes, such as acral and mucosal, form in parts of the body that are shielded from the sun such as the palms of hands, soles of feet, under fingernails, or in mucosal linings of different tissues. Approximately 5,000 patients are diagnosed with these melanoma subtypes annually, and due to their obscurity, patients often face later detection and poorer prognoses, despite positive advancements for treatments for cutaneous melanoma in the last decade. What’s more, people of color are also disproportionately affected by acral melanoma, largely due to the misconception that melanoma only impacts people with lighter skin and lighter colored eyes. The lack of awareness around rare melanomas compounded with misconceptions about the risks of melanoma makes the registry even more vital for these underrepresented populations.