MRA’s RARE Registry 2026 Report Reveals New Insights on Acral, Mucosal Melanoma

The Melanoma Research Alliance released its RARE Registry 2026 Data Report on July 30, 2026, giving researchers and clinicians the largest patient-reported dataset yet on acral and mucosal melanoma, Dermatology Times reported. The findings draw on nearly 750 participants who enrolled after the web-based registry launched in October 2022.

These patients have shared detailed surveys and medical records through a bidirectional, interactive platform designed to capture not just clinical data but quality-of-life measures that traditional studies often skip.

A Registry Built From Patient Stories

The MRA began developing RARE in 2020, inspired by patient advocates diagnosed with acral and mucosal melanoma who wanted their experiences to shape research. Critical knowledge gaps remained about how these melanoma subtypes develop, progress, can be treated, and impact patients’ quality of life. When the registry launched in October 2022, it became a tool where participants complete foundational surveys covering demographics, disease history, genetics, tumor biomarkers, treatment history and timeline, lifestyle, and quality of life.

Unlike other registries that typically focus on a single point in time, RARE asks participants to provide data over time and includes important questions about quality of life that are often neglected in clinical research. Participants can upload pathology and test reports through their portal, with electronic health record sharing expected soon, and they choose what information to share. They can also compare their experiences against others in the registry and receive notifications about melanoma-focused webinars, clinical trials, and recent research advances. The registry was intentionally designed as a collaborative effort involving patients, caregivers, clinicians, and researchers.

Dr. Joan Levy, the MRA’s chief science officer and principal investigator of RARE, described the project as co-created with patients, caregivers, physicians, and researchers. Joan Levy, Chief Science Officer, MRA, and PI of RARE, stated that the RARE Registry originated with patients and was developed jointly with patients, caregivers, physicians, and researchers, creating an avenue for those with acral, mucosal, and cutaneous melanoma to contribute details about their diagnostic experiences, the treatments they received, and their quality-of-life. Dr. Joan Levy also said it is a way for people to be actively involved and engaged in research and that there’s real power and strength in each individual facing a rare melanoma sharing their story.

Levy emphasized that preserving and advancing quality of life is critical to patients and often overlooked in clinical research. By sharing their experiences with diagnosis journeys, treatments offered, and quality-of-life information, patients help investigators identify research priorities and accelerate efforts to improve care for current and future patients.

Acral Melanoma’s Hidden Locations

The data report reveals that acral melanoma, which develops on the soles of the feet, palms of the hands, and underneath nails, most frequently appears on the sole of the foot, followed by underneath toenails or fingernails. Participants in the registry described first signs such as a mole that was new or changing, a streak on the nail, bleeding, or a wound that would not heal.

Dr. Jessica Scales of the Melanoma Research Alliance emphasized that acral melanoma can affect individuals across all racial and ethnic populations. She noted that dermatologists are uniquely positioned to monitor these sites during routine skin screenings.

“In these ways, dermatologists can play an enormous role in both disease prevention and early detection,” Scales said.

Researchers are still learning about why acral melanoma develops and its specific risk factors, Scales added.

The Agent Orange Risk in Veterans

A study published in JAMA Dermatology on February 4, 2026, found that veterans with documented Agent Orange exposure had about a 30% increased risk of developing acral melanoma. The finding adds a specific environmental risk factor to the list of questions researchers continue to investigate about this rare subtype.

Dermatologists Guide Rare Melanoma Awareness

Mucosal melanoma presents a different screening challenge because it develops in parts of the body not readily visible. Melanocytes are located in the nasal passages, mouth, gastrointestinal tract, and genital areas, and cancers arising there are often diagnosed by clinicians in gastroenterology, urology, gynecology, and other specialties rather than dermatology.

Scales said dermatologists remain instrumental in educating patients about these rare subtypes, emphasizing that melanoma occurs in more places than exposed skin. She encouraged patients to monitor skin changes, schedule routine skin exams, and promptly raise questions or concerns. The registry continues collecting data over time, allowing participants to share ongoing updates about treatments and quality of life while helping shape the future of melanoma research.

The RARE Registry remains open to new participants with acral, mucosal, and cutaneous melanoma. Enrollment details are available through the Melanoma Research Alliance’s RARE Registry page, and the full 2026 data report analysis is published on the MRA blog.