Mission: The purpose of the GCS Project is to provide help and hope for women with gynecological carcinosarcoma by providing educational information to patients, families and clinicians, offering patient advocacy, and supporting innovative research by fostering collaborations among scientists, clinicians and families. Our goals are to 1) Become instrumental in funding scientific research to find the cure for GCS. 2) Act as a vocal advocate for focused research and information-sharing in the medical community. 3) Serve as a trusted source for the most up-to-date information on the science and current research underway to find a cure for GCS. 4) Be a clearinghouse for relevant clinical trials. 5) Provide practical information to patients for post diagnosis action when they need it most. 6) Be a place for the GCS community to come together and provide support and hope. 7) Foster the establishment of Centers of Excellence across the country so every woman diagnosed with CGS has access to clinical expertise as close to where she lives as possible.
Results: Re Goal #1.We established and continue to support cutting-edge research that characterizes the genetic and epigenetic landscape of a group of primary and metastatic carcinosarcoma tumor samples. Our research teams at MGH, The Broad Institute and the Comprehensive Cancer Center at the University of Alabama at Birmingham have completed whole exome and transcriptome data analysis on 133 tumor tissue samples. In Fall 2018, the research teams will combine the analyses from the unique cutting-edge analytic platforms to understand the genetic mechanisms that drive metastatic carcinosacroma. We hope to see final results of this first phase research by Summer 2019.Re Goal #2 - Through our Board of Directors, we are working with experts in GYN carcinosarcoma to advocate for focused research and clinical trials in carcinosarcoma. Re Goal #3, #4, #5.The website has been developed to contain an extensive amount of relevant, up-to-date information on GYN carcinosarcoma, also known as MMMT. Patients and their loved ones comment that this is the only resource they have found (nationally and internationally) that provides this level of information. We developed educational videos by top clinical experts in GYN carcinosarcoma for our website and YouTube channel, which can be accessed on the website or here: https://www. youtube. com/channel/UCjNZHvJWsVIKSI5TR1NNROQRe Goal #6 - We are reaching and engaging many women and their families through the website, the interactive Forum at The GCS Project. org and our Facebook page. Re Goal #7 - We established our first Center of Excellence (COE) at the Comprehensive Cancer Center, University of Alabama at Birmingham, under the direction of Dr. Michael Birrer. We continue our work to develop additional COEs to enable more convenient access to clinical experts in GYN carcinosarcoma.
Target demographics: Women with ovarian and uterine carcinosarcoma (GCS), also called Malignant Mixed Müllerian tumor (MMMT), a rare type of ovarian cancer or uterine cancer. To provide support and to help fund a cure for this aggressive gynecological cancer.
Direct beneficiaries per year: Established a groundbreaking research program to focus on finding a cure for carcinosarcoma. We raised over $300,000 to begin this new research. The early research included sophisticated analyses of tumor specimens from women with GCS (MMMT), analyzing tumor cancer cells for mutations in order to develop targeted therapies to destroy the cancer cells.
Geographic areas served: Global education and advocacy resource for women with GCS and their supporters. The research team includes Massachusetts General Hospital (MGH), the Broad Institute in Boston. and the Comprehensive Cancer Center at the University of Alabama in Birmingham.
Programs: Focused cutting-edge research into finding a cure for carcinosarcoma; educational videos and interviews with leading experts; support for self-advocacy.