Melanoma is the deadliest form of skin cancer. Rates of melanoma are rising rapidly, especially in younger people. In fact, cases of melanoma have tripled in the last 30 years, at a time when cancer rates for other common cancers have declined.
Melanoma is a cancer of pigment producing-cells called melanocytes. These cells give each of us our unique skin color. Most melanomas originate on sun-exposed skin, though they can also develop in other parts of the body containing melanocytes, including the eyes and sun-shielded locations like mucous membranes or palms, soles, or under fingernails.
NOT ALL MELANOMAS ARE THE SAME
While roughly 90% of melanomas form on sun-exposed skin, rare melanoma subtypes — such as acral and mucosal — form in or on parts of the body that are shielded from the sun (such as palms of hands, soles of feet, under fingernails, or nasal cavities). Each year, about 5,000 patients are diagnosed with these subtypes. Due to their relative obscurity, patients facing these rare subtypes are often diagnosed later and have poorer prognoses.
To bridge this divide, MRA began work in 2020 to launch RARE, a web-based, bidirectional, and interactive registry for patients facing acral or mucosal melanoma with an anticipated launch in 4th Quarter of 2021. Through RARE, researchers will gain critical insight into the risk factors, treatment histories, and unique experiences of patients facing these subtypes in order to drive research forward.
“The RARE registry was the idea of patients and has been co-created with a group of patients, caregivers, physicians, and researchers. RARE is an opportunity for patients with acral and mucosal melanoma to share data about their diagnosis journey, treatments they were offered, and information on their quality of life. It’s a way for people to be actively involved and engaged in research,” says Dr. Marc Hurlbert, Chief Executive Officer, MRA, and Co-PI of RARE.