Bringing Patient Experience to the Forefront: The MRA’s RARE Registry at JADPRO Live 2025
The MRA highlighted new work on the RARE Registry in a poster presented called, MRA RARE Registry: Inspired by Patient Advocates Working Closely with MRA, which was presented at the 13th Annual JADPRO Live Conference—the annual meeting for the Advanced Practitioner Society for Hematology and Oncology (APSHO). APSHO’s mission is to improve outcomes and quality of life for patients with cancer by championing a team-based approach to cancer care.
This year’s conference, held at Maryland’s National Harbor, welcomed over 1,600 attendees and centered on the theme “United in Care” to spotlight the power of collaboration among patients, their caregivers, and multidisciplinary care teams in driving progress in cancer care. Paralleling this mission, MRA showcased its efforts to advance rare melanoma research at the JADPRO Annual Meeting, where Dr. Jessica Scales (MRA’s Associate Director of Rare Melanoma Research) shared new findings from the RARE Registry—a patient-powered effort aimed at addressing key knowledge gaps in rare melanoma research to improve patient care, treatments, and outcomes.
Accompanying charts in Dr. Scales’ poster illustrates early findings from the RARE Registry:
Three years after launch, 625 participants have enrolled in the RARE Registry, including 219 with a history of mucosal melanoma, 180 with acral melanoma, and 226 with cutaneous melanoma. “Participant data is powerful for the growth of the RARE Registry, allowing us to perform more robust analyses to learn about the patient experience, how cancer care can be improved, and for informing better treatment options,” said Dr. Scales.
As MRA is working towards publishing an initial report in early 2026, the completion of surveys will play a vital role in generating a more thorough and impactful analysis.