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The Melanoma Research Alliance (MRA) is proud to release the first-ever RARE Registry Data Report, highlighting insights from the largest direct-to-patient registry for individuals with acral, mucosal, and cutaneous melanoma.
Launched in 2022, the RARE Registry was created to address critical knowledge gaps surrounding rare melanoma subtypes by collecting real-world data directly from patients. Today, nearly 700 participants have contributed information about their diagnosis, treatments, genetics, quality of life, and lived experiences - creating a powerful resource to advance research and improve patient care.
The 2026 Report shares key findings on participant demographics, disease history, treatment history, genetics and tumor biomarkers, and quality of life. More importantly, it demonstrates the value of patient-reported data in helping researchers better understand rare melanomas like acral and mucosal - areas that have historically been underrepresented in research.
As the Registry continues to grow, so does its impact. Future initiatives include launching peer-reviewed research studies, integrating electronic health records with participant survey data, expanding enrollment, and connecting registry data with the MRA Melanoma Biorepository to create even greater opportunities for scientific discovery.
"The RARE Registry is an opportunity for patients to help shape the future of melanoma research. By sharing their experiences with melanoma, patients help investigators and clinicians to identify research priorities, thus accelerating efforts towards improving care and quality of life for current and future patients."
- Jessica Scales, PhD, Associate Director, Rare Melanoma Research at MRA
Every participant's story strengthens our understanding of melanoma and helps drive discoveries that will improve outcomes for future patients. Download the full 2026 RARE Registry Data Report below to explore the findings and learn how patient voices are helping shape the future of melanoma research.
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