What are the goals of the RARE Registry?

The RARE Registry objectives include:  

• Establish a direct-to-patient registry of patients with acral & mucosal melanoma to inform critical questions about risk factors, genetics, epidemiology, the patient experience, diagnosis pathways, treatments offered, adverse events, natural history of disease, clinical trial awareness, and quality of life. As a comparison of disease journeys, patients with non-acral cutaneous melanoma (the most common type of melanoma) will be included in the registry. 
• Provide patients an opportunity to have an active role in advancing research on rare melanomas by sharing data, receiving near-term insights on data gathered through the registry, posing key questions for future research, and serving on governance committees. 
• Provide researchers access to de-identified information to develop a more comprehensive understanding of acral & mucosal melanomas.