How Clinicians Can Improve Care for Patients with Rare Acral and Mucosal Melanoma
Why this matters
If you or a loved one has a rare type of melanoma, new patient-reported data from the Melanoma Research Alliance (MRA) may be helpful. The MRA published the first report from its RARE Registry, which collects information directly from people with less common melanoma subtypes. The registry and report give a clearer view of patients’ experiences with diagnosis, treatment, quality of life, and access to care.
What is the RARE Registry?
The RARE Registry is an online, interactive tool where people with certain melanomas can share their medical history and experiences. It focuses on three groups:
- Acral melanoma — appears on palms, soles, and under nails.
- Mucosal melanoma — starts on mucous membranes, such as inside the mouth, nose, or genital areas.
- Cutaneous melanoma — starts on the skin.
The registry is designed so researchers can learn from real patients, and patients can help shape future studies and care recommendations. Jessica Scales, PhD, associate director of Rare Melanoma Research at the MRA, discussed the registry and the report.
What the report looked at
The first data report comes from a survey with more than 40 questions. Participants answered about their disease and treatment history, any genetic or tumor testing they had, and how melanoma affected their daily life and well‑being. The report shares findings for melanoma overall and for each of the three subtypes listed above.
Clinical trials — why they matter and how clinicians can help
One clear message from patients: clinical trials often feel like a “last resort.” Many people said trials weren’t brought up early in their care, even though some patients might be eligible for studies right after surgery or as additional (adjuvant) treatment to reduce the chance of the cancer returning.
Scales and the MRA suggest that clinicians include trials in early conversations, explain how trials work, and describe how to enroll. The MRA also provides webinars and FAQs clinicians can share with patients. The organization works with trial sponsors to clarify eligibility so people with rare subtypes aren’t accidentally left out.
Distance and access are real barriers
Another big challenge is travel. Many clinical trials and specialized centers are located at major academic medical centers, while patients live all over the country. The registry found that people who did enroll in trials traveled an average of 370 miles to participate. That kind of distance can make it hard for patients to access trials or specialists.
The MRA plans to study what drives these access gaps and how they might be reduced.
How clinicians and patients can get involved
The report highlights several ways clinicians can support patients and research:
- Tell eligible patients about the RARE Registry and encourage them to join. Larger patient numbers make it easier to learn meaningful things from the data.
- Read the report and suggest additional survey questions or research priorities to the MRA.
- Use the MRA’s educational materials about clinical trials when talking with patients.
- Help patients connect their medical records to the registry once the MRA’s electronic health record integration tool is available.
- Promote the MRA Melanoma Biorepository. This is a direct-to-patient biobanking effort where consenting patients can send tumor and normal tissue samples to researchers studying acral, mucosal, and cutaneous melanoma. Clinicians or interested patients can contact biorepository@curemelanoma.org for more information.
The MRA is also building a data portal so qualified researchers and clinicians can access aggregate, de-identified registry data for approved studies.
Quality of life is part of the picture
Patients reported effects on both physical and mental well-being during and after treatment. The registry data and an upcoming peer-reviewed study emphasize that quality of life matters alongside clinical outcomes.
Scales hopes the report will encourage more personalized care at every disease stage and remind clinicians to consider daily functioning, emotional health, and long-term effects when planning treatment.
Tracking visible changes over time
Keeping photos or notes about moles, spots, or other skin changes can help you notice important differences over time. That information may make it easier to describe changes to your dermatologist and decide whether a clinic visit is needed.
When to see a doctor
Contact a dermatologist or your medical team if you notice any of the following:
- New or changing lumps, moles, or spots
- Bleeding, oozing, or crusting from a lesion
- Fast growth, new pain, or signs of infection
- Any concerning new symptoms or uncertainty about a skin change
These signs don’t always mean melanoma, but they should be checked. Treatment decisions and concerns about trials or testing should be discussed with your doctor or dermatologist.
Disclaimer
This article summarizes the MRA’s RARE Registry report and comments from Jessica Scales, PhD. It is informational and not medical advice. Talk with your healthcare team about any questions about diagnosis, testing, treatment, or clinical trials.
Sources
- Melanoma Research Alliance. The RARE Registry 2026 data report: patient voices empowering research. Accessed November 5, 2026. https://www.curemelanoma.org/blog/the-rare-registry-2026-data-report-patient-voices-empowering-research (Source: Melanoma Research Alliance, RARE Registry 2026 data report)