The national melanoma research registry: A fundamental for disease characterization and epidemiology

Abstract

Abstract 5806 Background Approximately 7200 Canadians are diagnosed with primary melanoma each year resulting in 1240 deaths. While the advent of new treatment provides hope, the emergence of precision medicine requires genomic data and clinical trials benefit from real-world data. To avail of these advances, a better understanding of both disease characterization and the impact of treatment on both clinical endpoints and patient reported outcomes is necessary to assess morbidity and mortality. We initiated a Pan-Canadian Melanoma Research Network (CMRN) in 2010 to collect both clinical and patient reported data. Methods The CMRN collects data retrospectively and prospectively from ten cancer centers in Ontario, Alberta and Quebec. The data dictionary includes 250 disease specific variables collected to produce structured data, including stage, pathology, tumour mutation types, time from primary diagnosis to recurrence, sites of metastases, and lines of treatment. Outcomes such as metastasis free interval, quality of life and survival and performance status are collected. Results 3016 patients (pts) have consented to this registry. 11% pts are < 50 years; 42% pts are 41-70 years; whereas 47% pts are > 71 years. 58% are male and 42% are female. 67% of pts presented with Stage I or II melanoma, and 33% presented with Stage III or IV. Of pts with known primary histology, 73% were classified as superficial spreading or nodular (36.5% each). Of the 589 pts who received mutation testing, 51% were found to have a BRAF mutation. Interferon treatment accounted for 80% of adjuvant therapies, whereas < 3% were checkpoint inhibitors or targeted therapies. 931 pts received metastatic systemic treatment. 14% of 1st line treatments were targeted therapies, whereas 18% were checkpoint inhibitors. 49% of metastatic patients received a 2nd line treatment, with checkpoint inhibitors and targeted therapies accounting for 65% and 10%, respectively. Conclusions This CMRN allows for detailed analysis of both patient and disease characteristics, providing a key tool for future research. This network is still expanding to include additional provinces and continues to conduct real-world research to advance care and improve outcomes. Clinical trial identification Legal entity responsible for the study Global Melanoma Research Network. Funding Global Melanoma Research Network. Editorial Acknowledgement Disclosure All authors have declared no conflicts of interest.