MRA's RARE Registry Data Report Findings on Acral and Mucosal Melanoma

Jessica Scales, PhD, associate director of Rare Melanoma Research at the Melanoma Research Alliance (MRA), recently discussed the first data report from the MRA’s RARE Registry.¹ RARE is a web-based, bidirectional, and interactive registry for patients with acral, mucosal, and cutaneous melanoma.² Scales outlined the report’s scope and its relevance to dermatologists screening for acral and mucosal melanoma.

Patient-Reported Data From the RARE Registry

Scales noted nearly half of cutaneous melanomas do not respond to current treatments despite treatment advances. Launched in 2022, the registry now includes more than 700 participants.¹

The report features more than 40 survey questions covering disease and treatment history, genetics, tumor biomarkers, and quality of life. It presents insights across melanoma overall and for each of the three subtypes.

“These rare subtypes affect a relatively small number of patients annually, but are diagnosed at more advanced stages and have few to no treatment options,” Scales said.

Acral Melanoma Screening in Dermatology

Acral melanoma develops on the soles of the feet, palms of the hands, and underneath nails.

“Dermatologists are actually uniquely positioned to monitor these sites during routine skin screenings,” Scales said.

Registry participants with acral melanoma reported initial symptoms including a new or changing mole, a nail streak, bleeding, or a non-healing wound. The most frequently reported site was the sole of the foot, followed by underneath a toenail or fingernail. Scales added acral melanoma can affect individuals across all racial and ethnic populations.

Dermatologists can encourage patients to monitor skin changes, schedule routine skin exams, and promptly raise questions or concerns.

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

Risk Factors and Mucosal Melanoma Challenges

“Researchers are still learning about why acral melanoma develops and its risk factors,” Scales said. A recent JAMA Dermatology study found veterans with documented Agent Orange exposure had about a 30% increased risk of developing acral melanoma.³

Scales said mucosal melanoma is more challenging for dermatologists to screen for because it develops in parts of the body not readily visible. Melanocytes are located in the nasal passages, mouth, gastrointestinal tract, and genital areas. Consistent with registry data, patients are often diagnosed by clinicians in gastroenterology, urology, gynecology, and other specialties.

Scales said dermatologists remain instrumental in educating patients about these rare subtypes. They can emphasize melanoma occurs in more places than exposed skin.

References

1. Scales J. The RARE Registry 2026 Data Report: Patient Voices Empowering Research. July 30, 2026. Accessed November 4, 2026. https://www.curemelanoma.org/blog/the-rare-registry-2026-data-report-patient-voices-empowering-research
2. Melanoma Research Alliance’s RARE Registry. Melanoma Research Alliance. Accessed November 4, 2026. https://www.curemelanoma.org/research/rare-registry
3. Hwang JC, Huhmann LB, Cho K, et al. Identification of Risk Factors for Acral Melanoma in US Veterans. JAMA Dermatol. Published online February 4, 2026. doi:10.1001/jamadermatol.2025.5827