The RARE Registry gives patients and family members the opportunity to help answer critical questions about acral & mucosal melanoma. The registry will help researchers better understand the risk factors, genetics, epidemiology, diagnosis pathways, treatment effectiveness, adverse events, natural history of disease, clinical trial awareness and quality of life for patients with acral and mucosal melanoma.
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. 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. Joan Levy, Chief Science Officer, MRA, and Co-PI of RARE. “There’s real power and strength in each individual facing a rare melanoma sharing their story.”
Unlike other registries that typically focus on a singular point in time (e.g., baseline survey), RARE will ask patients to provide data over time and will ask important, but often neglected, questions about their quality-of-life. This is important because preserving — and even advancing — quality-of-life is critical to patients and is often overlooked in medical research. In addition, RARE will enable patients to engage with one another as well as the research community in new ways. Doing so will provide a more comprehensive picture of patients facing these rare melanoma subtypes as well as what many patients crave most: community connection.
Your Data Helps Advance Research
Acral and mucosal melanoma are rare, so each participant is crucial. Researchers, clinicians, and companies need to better understand who is affected and how they are affected in order to successfully develop effective treatments and to identify potential causes of these rare subtypes. By voluntarily sharing information through the RARE Registry, you can help ensure that the field is focused on aspects of the disease that are most important to those affected.
The Melanoma Research Alliance (MRA) welcomes those who have been diagnosed with melanoma to participate. Registration is easy, and you can choose what information you want to share through surveys and your medical records.
Who Leads the RARE Registry?
The RARE Melanoma Registry is an initiative led by the Melanoma Research Alliance. MRA was formed in 2007 and is the largest non-profit funder of melanoma research worldwide. Since its founding, MRA has committed $143 million, and leveraged an additional $417 million from outside sources, to fund life-saving melanoma research needed to achieve its mission of ending suffering and death due to melanoma.
To further guide the RARE Registry, the Melanoma Research Alliance created an Oversight Committee comprised of patients and caregivers, as well as a multi-disciplinary group of medical advisors including dermatologists, pathologists, oncologists, scientists, and surgeons. The medical advisors’ research interests span bench research, epidemiology, quality of life research, translational research and clinical trial development. Learn more about the oversight committee here.
Learn more about the RARE Registry, including how to register and participate, at RAREMelanoma.org.