| On November 11 in Boca Raton, Florida; the Chondrosarcoma Foundation hosted its first Think Tank entitled: Advancing Chondrosarcoma Treatment, Preventing Disease Progression, Recurrence & Metastasis. The first four videos of the think tank have been posted on the Chondrosarcoma Foundation web site, and we invite you to view it. / The first video features William Tap, M.D. Chief of Sarcoma Medical Oncology at Memorial Sloan Kettering in New York City. Dr. Tap provided insights into chondrosarcoma microbiology, particularly the significance of its subtypes and genomic characteristics, including the role of IDH mutations. He emphasized the necessity for a unified effort to share resources and knowledge within the chondrosarcoma community to advance research and develop effective therapies, aiming to rally participants around shared objectives in chondrosarcoma research and treatment. He also addressed challenges in measuring drug responses in patients with progressing disease alongside the need for improved clinical trial designs. Dr. Tap shared positive results from the Chondragon Clinical Trial study, which could potentially lead to FDA approval for a new drug, representing a significant advancement for the chondrosarcoma community.The foundation President, Jeffrey Kramer shared findings from the patient registry, initiated in March 2023, which included data from 343 participants. Alarmingly, over half of the participants were unaware of their cancer subtype, and nearly half reported previous misdiagnoses. The need for initiatives to increase public awareness, improve early detection, and foster research collaborations was emphasized, with the goal of developing a strategic plan to support viable research and treatment innovations. The link to the video is: https://csfshayna.org/thinktank The second video: Early Detection with Anthony Conley, M.D.; Joseph Schwab, M.D. and Francis Hornicek, M.D. provides an examination of efforts to address early detection of chondrosarcoma and a discussion of the benefits of developing and disseminating screening tools and use of other tests to the public and greater medical community. For use in: (1) Early detection of chondrosarcoma in a general population (2) Early detection of chondrosarcoma in a patient with risk factors (enchondromatosis, osteochondromatosis) (3) Early detection of metastasis in a patient with a history of chondrosarcoma. Can self-monitoring and medical screening tools for sarcoma / chondrosarcoma in combination with an education awareness campaign to assess lump growth, swelling, pain, and restricted mobility improve outcomes. Will the use of other tests such as liquid biopsies / ctDNA, scans for early detection improve outcomes. Are early detection strategies an effective deterrent to prevent disease progression, recurrence, and metastasis? https://csfshayna.org/early-detection/ The third video: Diagnosis with Adrienne Flannagan, M.D.; John Gross. M.D. and Andrew Rosenberg, M.D. looked at current and future efforts to improve the diagnosis of chondrosarcoma as well as the identification of the sub-types and grades. It also addressed future efforts to improve diagnosis, reduce misdiagnosis as well as discussing the role that genomic sequencing and transcriptional testing can have in improving diagnosis and preventing disease progression. https://csfshayna.org/diagnosis/ The fourth video: Surgery and Interventions with Joseph Schwab, M.D.; Christian Meyer, M.D. and J.W. Snider, MD., discuss the role surgery and other interventions have in the prevention of disease progression? Should surgery continue to be the first intervention considered in treating chondrosarcoma or do we consider other interventions or combinations before or immediately after surgery to prevent disease recurrence/metastasis? Each presenter discussed the options and specifically the role radiation therapies including proton radiation, and systemic medications have in preventing disease progression. https://csfshayna.org/surgery/ Topic 5: Research and Clinical Trials. This session addresses the status of chondrosarcoma research, clinical trials, and recommendations for innovative studies to prevent recurrence and metastasis. The role of IDH1 is examined as well as the difference between IDH1 mutated and nonmutated tumors and the progression genomically and epigenetically for both. An overview of current clinical trials including INBRX 109, Ivosidenib, SON1010+Trabectedin and DNG64 (formerly DeltaRex-G) and the role they have in the prevention of disease progression. A look at what innovative, science-based interventions can work towards preventing disease progression and address aggressive sub-types and advanced metastatic chondrosarcoma and how we advance discovering new molecular targets for treatment, identify novel approaches to combat drug resistance to existing treatments and identify biomarkers as a tool for earlier detection and prevention of disease progression? https://csfshayna.org/research/ Topic 6: Moving Forward Anthony Conley, M.D.; Neal Chawla, M.D. and Joseph Schwab, M.D. discuss what can be collectively accomplished to create a comprehensive strategy to prevent disease progression recurrence and metastasis. This includes the newly established Chondrosarcoma Tumor Board; a panel of multidisciplinary medical experts that help connect patients with appropriate next steps or options. The link to final topic of the Think Tank is: https://csfshayna.org/moving-forward/ The last video is Closing Remarks. William Tap, M.D. lead a discussion with the participants from the Think Tank on what next steps we should take to advance the prevention of disease progression, foster and introduce new research and clinical trials and advance the treatment of chondrosarcoma. https://csfshayna.org/closing/ Next Steps It is important to keep the momentum going, The next step will include a meeting summary and a strategic plan for the Chondrosarcoma Foundation to obtain and build resources that will advance the prevention of disease progression, introduce new research and expand clinical trials and advance the treatment of chondrosarcoma. Action Item: We submitted a letter of interest to apply for a grant from PCORI: Patient Centered Outcomes Research Institute. The working title is: Bio-Molecular-Informed Treatment Decision-Making in Chondrosarcoma. This is a Grant opportunity that involves “Partnering Research and Community Organizations for Comparative Clinical Effectiveness Research Across the Cancer Care Continuum.” Our proposal is to expand the Chondrosarcoma Patient Registry to include patient medical records and include the genomic and transcriptional elements of chondrosarcoma to 1. Understand the DNA- and RNA-based signatures of chondrosarcoma as well as defining the relevance of ctDNA before and after interventions. 2. Identify potential therapeutic targets for current and future trials and 3. Deliver a data resource to the research community for future use. 4. Examine what interventions are most effective using bio-molecular data. If we are successful in getting approved to submit a grant, we will invite you to attend a Zoom meeting to discuss the details of the proposed study, share your thoughts and expertise and determine if you would be interested in collaborating with the Chondrosarcoma Foundation in recruiting CS Patients for the study. |