How Clinicians Can Support Patients With 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 how dermatologists and referring clinicians can support patients with rare melanoma subtypes. 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 subtype of acral, mucosal, and cutaneous melanoma.

Clinical Trial Access for Rare Melanoma

Scales said clinicians can begin by making clinical trials part of the conversation early in a patient’s care. Registry participants reported clinical trials were raised as a last resort, though some patients may be candidates in the adjuvant setting or following surgery.

“Dermatologists and referring clinicians can also further demystify clinical trials by explaining to patients how they work, how to enroll, and their potential benefits and limitations,” Scales said.

The MRA offers webinars and frequently asked questions on clinical trials for clinicians to share with patients. It also works with trial sponsors to clarify whether eligibility criteria include rare melanoma subtypes, so patients are not inadvertently excluded.

Travel Burden and Access to Specialized Care

Distance presents an additional barrier. Major academic centers serve as trial hubs, while registry participants are distributed throughout the United States and are not always near them.

“Rare registry participants who enrolled in a trial traveled an average of 370 miles, and this highlights the potential challenge of accessing both clinical trials and specialized care for patients,” Scales said. The MRA plans to examine the factors driving access, or the lack of it, to clinical trials.

Ways Clinicians Can Get Involved

Clinicians can raise awareness of the RARE Registry and encourage eligible patients to participate. “There’s power in numbers,” Scales said.

She encouraged clinicians to read the first data report and to suggest additional surveys and research priorities. The MRA is developing a data portal to give qualified researchers and clinicians access to aggregate, de-identified registry data. It is also launching an electronic health record integration tool, allowing participants to connect their medical records.

Clinicians can also promote the MRA Melanoma Biorepository, a direct-to-patient biobanking initiative. Tumor and normal tissue samples from consenting patients will go to qualified researchers studying acral, cutaneous, and mucosal melanoma. Scales said the effort addresses the limited availability of biospecimens, and interested clinicians can email biorepository@curemelanoma.org.

Quality of Life in Melanoma Care

Quality of life appears in the data report and in an upcoming peer-reviewed study. Patients described effects on physical and mental well-being, both during and after treatment.

“The patient voice is essential to improving how patients with all types of melanoma, whether common or rare, receive care throughout their disease journeys,” Scales said.

Scales hopes dermatologists will weigh quality of life alongside clinical outcomes for all patients with melanoma. She also hopes the report encourages a more personalized approach across all stages of disease.

Reference

1. The RARE Registry 2026 data report: patient voices empowering research. Melanoma Research Alliance. Accessed November 5, 2026. https://www.curemelanoma.org/blog/the-rare-registry-2026-data-report-patient-voices-empowering-research