Melanocytes are highly specialized pigment-producing cells most well recognized for their presence in the skin – where they protect surrounding and underlying tissues from the sun’s ultraviolet radiation – but melanocytes are also present in less visible anatomical sites, such as mucosal membranes, the palms of hands, the soles of feet, or under fingernails. Melanoma arises when melanocytes acquire mutations that cause them to develop into cancer, and given their many locations in the human body (some of which that are not exposed to ultraviolet radiation), several melanoma subtypes with differing genetic and biological features emerge.
Not All Melanomas Are The Same
The most common form, cutaneous melanoma, develops on sun-exposed skin and accounts for nearly 90% of all melanoma cases. Cutaneous melanoma is the deadliest form of skin cancer; rates of cutaneous melanoma are rising rapidly, especially in young people. In fact, cases of cutaneous melanoma have tripled in the last 30 years, at a time when cancer rates for other common cancers have declined.
The rarer melanoma subtypes – including acral and mucosal melanoma – which form in or on parts of the body that are shielded from the sun (including under nails as well as nasal cavities, the gastrointestinal tract, and other mucosal linings) collectively affect approximately 5,000 patients each year. Due to their relative obscurity, patients facing these rare melanoma subtypes are often diagnosed later, have poorer prognoses, and are in need of treatment options that consider the distinct genetics and biology of their rare melanoma subtype.
Despite the recently growing knowledge of these rare melanoma subtypes, there are still key questions that remain about their biology, and the pace of scientific discovery for acral and mucosal melanoma still lags behind that of the more common cutaneous (skin) melanoma. However, research must also still continue for cutaneous melanoma, as 50% of these patients do not respond, or develop resistance to, currently available treatment options for cutaneous melanoma.
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. RARE officially launched in May of 2023 and now also welcomes those who have been diagnosed with cutaneous melanoma. Through RARE, researchers will gain critical insight into the risk factors, treatment histories, and unique experiences of patients facing these melanoma 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, mucosal, and cutaneous 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 at the MRA.