Grant: Planning and Dissemination Grant - Institute Community Support

Ten years ago, we discovered that genetic lesions in the gene SMARCA4 were the cause of a rare but deadly form of ovarian cancer called Small Cell Carcinoma of the Ovary, Hypercalcemic Type (SCCOHT). This cancer affects primarily girls and young women. Research efforts to improve outcomes have been hampered by the rarity and aggressiveness of the disease because of limited opportunities to recruit local participants, data and samples into research projects to test new therapies. Several charities, supported in large part by relatives of affected women, have emerged to support SCCOHT and, thanks to their support, in 2018 the International SCCOHT Consortium (ISC) was born from a first meeting in London, UK where researchers and advocates from around the world met to discuss how best to collaborate to advance knowledge into this devastating disease. Following this meeting, we created the SCCOHT/SMARCA4 Registry and Biobank in Montreal. After almost 5 years of activity, the Registry now counts 100 consented participants recruited worldwide, including patients and relatives from 14 countries. The samples collected help support the creation of experimental models, improve diagnostic strategies and support research into improved therapeutic options. Our team is often solicited for advice by healthcare professionals who encounter the disease for the first time. This application aims to secure financial support for a second meeting of the ISC. The proposed meeting will be held in Montreal in May 2025 and will include talks by researchers, health care providers and patient survivors. Funding will be used to help partially cover travel expenses for presenters and attendees who would otherwise not have access to the necessary funding to attend (e.g. international patient participants, trainees). This meeting will be an opportunity to review the progress made since 2018 and strategize on how to best collaborate moving forward.