Building a Community to Advance Research for Patients with Acral Melanoma
Abstract
Scientific Objective and Rationale: Acral melanoma (AM) is a rare subtype of melanoma that makes up about 2,000-3,000 of melanoma cases in the United States each year, with a higher proportion of cases in populations with skin of color. Patients with AM generally have fewer effective treatment options and lower overall survival than patients with cutaneous melanoma, the most common form of the disease. Researchers also do not understand what causes this rare melanoma subtype – but do not believe it to be from ultraviolet radiation from the sun. A registry for patients with acral and mucosal melanoma (RARE) – is being established by the Melanoma Research Alliance, the largest non-profit funder of melanoma research. The registry is a living database that collects information from participants in a structured way through a variety of surveys about treatment history, quality of life, and other factors. Participants who consent will be asked to provide additional information from their medical records and stored tumor tissue. The tumor tissue will be used to create a biorepository for researchers to access to better understand the unique molecular characteristics (genomics) of AM. This proposal is focused on building two portals for RARE: an open-access data portal that anyone can use to study de-identified patient-reported and clinical data and a second portal that will provide information about the molecular and genomic features of AM derived from tissues in the biorepository. Applicability of the Proposed Research: RARE will be the first direct-to-patient, multi-institutional registry of patients with AM and mucosal melanoma (MM). RARE is being developed in partnership with a patient, caregiver, and multidisciplinary medical expert oversight committee. RARE will help patients by engaging them directly in the research process and by raising awareness about these rare melanoma subtypes through marketing and patient recruitment efforts. For purposes of this proposal, RARE will pilot all efforts with AM first – and then rapidly expand efforts to include patients with MM. Data generated will be studied by researchers and will inform a better understanding about patient quality of life (QOL), risk factors, early detection and treatment guidelines, barriers in the clinical management of the disease, as well as molecular attributes that could identify new targets for drugs to be tested. Impact/Unmet Need: Large clinical and molecular datasets from a representative population of AM patients are needed to make improvements in the diagnosis, management, and treatment of AM across the diverse patient population. No such comprehensive datasets exist; therefore, RARE intends to recruit patients with AM from all over the U.S., ensuring that the data captured in the registry represents the true ethnic and racial diversity of this disease. Likely Contributions of this Study to Advancing Rare Cancers Research RARE is the first of its kind registry in acral and mucosal melanoma, and data collected will inform our collective understanding of these melanomas. The web-based, direct-to-patient model maintains active engagement of participants and can be replicated by other rare cancers. De-identified patient-entered data, data from clinical records, and genomic data will be made available to any interested researchers, free of charge. In addition, the strategies being used in RARE for outreach to a representative patient population could be could adopted by other registries for patients facing rare cancers. Role of Rare Cancer Stakeholder Community in Proposed Study The concept for RARE came from patients with AM and MM who saw the need for more research in these understudied and rare cancers. Twelve patients and caregivers with AM and MM serve on the Oversight Committee and will continue to guide RARE over the next several years. These stakeholders will ensure the patients’ voice and needs remain central to the regi
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 28, 2022
- Source ID
- W81XWH2210768
Entities
People
- Joan Levy
Organizations
- Melanoma Research Alliance
- United States Army