The RARE Registry gives you the opportunity to be a part of research needed to answer critical questions about 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, mucosal, and cutaneous melanoma.
While roughly 90% of melanomas form on sun-exposed skin (cutaneous melanoma), rare melanoma subtypes — such as acral and mucosal — form in or on parts of the body that are shielded from the sun (such as the palms of hands, soles of feet, under fingernails, or in nasal cavities and other mucosal linings). Each year, about 5,000 patients are diagnosed with these rare melanoma subtypes. Due to their relative obscurity, patients facing these rare subtypes are often diagnosed later and have poorer prognoses.
To bridge this divide, the Melanoma Research Alliance (MRA) began work in 2020 to launch RARE, a web-based, bidirectional, and interactive registry for patients facing acral or mucosal melanoma. Additionally, RARE now welcomes those who have been diagnosed with cutaneous melanoma to participate. 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 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 at the 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., a 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 participants 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 melanoma subtypes (acral, mucosal, and cutaneous melanomas) as well as what many patients crave the 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 MRA welcomes those who have been diagnosed with acral, mucosal, and cutaneous 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 Registry is an initiative led by the Melanoma Research Alliance (MRA). MRA was formed in 2007 and is the largest non-profit funder of melanoma research worldwide. Since its founding, MRA has committed $175 million, and leveraged an additional $500 million from outside sources, to fund life-saving melanoma research needed to achieve its mission of ending suffering and death due to melanoma. Learn more about the MRA at CureMelanoma.org.
To further guide the RARE Registry, the MRA 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.
Privacy
The RARE Registry is built to protect your data. It is compliant with HIPAA and GDPR. You may withdraw from the registry at any time. Please review our Terms and Conditions, Privacy Policy, and Informed Consent Document.
