Mar 1, 2024

One of the most commonly asked questions by mucosal melanoma patients is "why did I develop this disease???" Cancers can be caused by genetic risk factors (think a germline mutation passed down and multiple family members affected), environmental factors (think radon exposure, chemical exposures at work), and/or lifestyle factors (think smoking, HPV in cervical cancer). While clinicians and researchers have access to genomic DNA from patients to evaluate genetic risks, the only way we can study environmental and lifestyle factors is by getting that information directly from PATIENTS! Given the particularly sensitive nature of lifestyle factors that may impact vulvovaginal and/or anorectal melanomas, we felt an anonymous survey is the best way to obtain this information. Our survey is a two-part survey: first, patients anonymously complete their survey on environment and lifestyle hisotry. Then, they get a unique ID number to give to their oncologist to complete a second survey anonymously (the oncologist does not see any patient survey answers), which provides clinical information that is sometimes hard for patients to answer. We have an initial goal of 250 participants, and hope this data will provide some knowledge that can contribute to prevention and earlier detection of mucosal melanoma. If you are a patient, please take our survey and help spread the word! And, if you are a treating oncologist, please take the extra time to complete the important follow up survey.

Nov 1, 2023

Collaboration is key when it comes to clinical and translational research for rare diseases. Out of all the "rare" forms of melanoma, mucosal melanoma is truly the rarest of the rare as it only accounts for ~1% of malignant melanoma cases. To date, mucosal melanoma research is lagging behind all other melanoma subtypes. In order to boost collaboration within the mucosal melanoma community, the Melanoma Research Foundation (MRF) sponsored a one-day workshop at Columbia University on December 15, 2022. The workshop, "Increasing collaboration amongst the mucosal melanoma community" brought together clinicians, researchers, and patients in a first-of-its kind meeting focused solely on mucosal melanoma and how we can work collaboratively moving forward to launch mucosal melanoma based research findings from risk factors to effective therapies. The published article provides a review of mucosal melanoma, an overview of the topics and talks given during the workshop, and a compass of which direction the field needs to head as we move forward toward better understanding and treatments for mucosal melanoma.