RARE Registry data sharpen acral and mucosal melanoma care

By Tom Whitfield

The Melanoma Research Alliance’s RARE Registry, launched in 2022 for patients with acral, mucosal, and cutaneous melanoma, now includes more than 700 participants.

The web-based, bidirectional, and interactive project collects patient-reported information through more than 40 survey questions. These address disease and treatment history, genetics, tumor biomarkers, and quality of life. Its first data report presents findings across melanoma overall and for each of the registry’s three categories.

Dated July 30, 2026, the report carries the title “The RARE Registry 2026 Data Report: Patient Voices Empowering Research.” Jessica Scales, PhD, associate director of Rare Melanoma Research at MRA, discussed its scope and dermatologists’ role in detecting rare melanoma.

“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. She also noted that nearly half of cutaneous melanomas do not respond to current treatments, despite advances in treatment.

What warning signs appear in acral melanoma?

Acral melanoma develops on the soles of the feet, palms of the hands, and underneath nails. Registry participants with acral melanoma reported several initial symptoms:

• A new or changing mole.
• A nail streak.
• Bleeding.
• A non-healing wound.

The most frequently reported site was the sole of the foot, followed by underneath a toenail or fingernail. Acral melanoma can affect individuals across all racial and ethnic populations, so routine screening should not depend on a patient’s race or ethnicity.

Where can dermatologists intervene?

“Dermatologists are actually uniquely positioned to monitor these sites during routine skin screenings,” Scales said. Examining palms, soles, and nails can reveal changes before they become advanced cancers.

Dermatologists can encourage patients to monitor their skin, schedule routine examinations, and raise concerns promptly. Patients should also seek evaluation for bleeding, a new streak beneath a nail, or a wound that does not heal.

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

What is known about acral melanoma risk?

“Researchers are still learning about why acral melanoma develops and its risk factors,” Scales said. A recent study identified exposure as one potential factor among people with the disease.

A JAMA Dermatology study led by J.C. Hwang, with L.B. Huhmann, K. Cho, and colleagues, was published online February 4, 2026. Titled “Identification of Risk Factors for Acral Melanoma in US Veterans,” it found that veterans with documented Agent Orange exposure had about a 30% increased risk of developing acral melanoma.

Why does mucosal melanoma escape routine screening?

Mucosal melanoma presents a greater screening challenge because it develops in areas that are not readily visible. Mucosal melanocytes occur in the nasal passages, mouth, gastrointestinal tract, and genital areas.

Consistent with the registry data, patients with mucosal melanoma often receive their diagnosis from clinicians in gastroenterology, urology, gynecology, and other specialties. That pattern places dermatologists outside the initial point of detection for many patients.

Scales said dermatologists remain instrumental in educating people about these rare subtypes. Patients need to understand that melanoma can develop in more locations than exposed skin, not only where a routine skin examination can readily reveal it.

What should happen next?

As the RARE Registry expands beyond 700 participants, investigators should use its patient-reported data to develop better screening and treatment strategies for these underrecognized cancers. In clinics, systematic examination of palms, soles, and nails, paired with education about hidden mucosal sites, offers the clearest route to earlier detection.