In October 2022, the Melanoma Research Alliance (MRA) launched the first direct-to-patient registry called RARE for patients with acral, mucosal, and cutaneous melanoma. The RARE Registry is a patient-centered, web-based platform designed to advance our understanding of melanoma, particularly for rare melanoma subtypes such as acral and mucosal melanoma.
While most melanomas develop in locations where the skin is frequently exposed to the sun (cutaneous melanoma), rarer forms can develop in areas of the body that receive little to no sun exposure, including the palms of the hands, soles of the feet, and underneath nails (acral melanoma), as well as, mucosal surfaces that line areas of the body like the nasal passages, mouth, gastrointestinal tract, and genital areas (mucosal melanoma). These rare subtypes affect a relatively small number of patients each year, but are often diagnosed at more advanced stages. They do not respond as well to approved treatments for melanoma, and are associated with poorer health outcomes.
RARE was inspired by patient advocates diagnosed with acral and mucosal melanoma, and was intentionally designed as a collaborative effort involving patients, caregivers, clinicians, and researchers. The RARE Registry was created to address critical knowledge gaps in these underserved patient populations by collecting comprehensive, real-world data directly from patients.
The patient perspective is captured through multiple foundational surveys that focus on an individual’s demographics, disease history, genetics and tumor biomarkers, treatment history and timeline, lifestyle, and quality of life, which are areas often underrepresented in clinical research involving these melanoma subtypes.
Through the collection of both clinical data and patient-reported experiences, RARE provides a more holistic understanding of these melanoma subtypes, the impact on those diagnosed, and real-world evidence that can support longitudinal studies. Unlike traditional registries, RARE allows participants to complete and update their surveys over time, creating a more complete and evolving picture of an individual’s disease journey.
“Getting the word out about the existence and unique features of these rare melanoma subtypes is crucial,” says Boris Bastian, MD, PhD, a Scientific Advisor for the RARE Registry and physician-scientist at the University of California San Francisco. “These efforts are so critical because they create a forum for people to get together and counteract these factors that otherwise impede progress.”
“Getting the word out about the existence and unique features of these rare melanomas is crucial.”
A central goal of RARE is to generate actionable insights that can inform research, improve clinical care, and accelerate the development of effective treatments for patients with acral, mucosal, and cutaneous melanomas. Ultimately, RARE represents an opportunity towards more inclusive, patient-driven research, with the aim of reducing disparities in rare melanoma patient care and improving health outcomes for those affected by melanoma.
“We started the RARE Registry to bridge this divide and address the unmet needs of the rare melanoma community, from patients and caregivers to leading researchers and physicians. Power and strength arise in those facing a rare melanoma diagnosis who share their stories. We are so grateful to the RARE Registry participants who are already driving this critical research forward,” states Joan Levy, PhD, Chief Science Officer of the MRA and Principal Investigator of the RARE Registry.
Now in 2026, we are excited to share the first RARE Registry report, which captures key insights from RARE participants and helps bring greater visibility to the voices and experiences of individuals with acral, mucosal, and cutaneous melanoma.
