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Chondrosarcoma CS Foundation, Inc.

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    Chondrosarcoma Patient Registry confirms Surgery is the First and most utilized Treatment Intervention for Chondrosarcoma

    Chondrosarcoma Patient Registry confirms Surgery is the first and most utilized Treatment Intervention for Chondrosarcoma

    The ChondrosarcomaFoundation was the first foundation to be inducted into the NORD IAMRARE Patient Registry 2.0 platform. Since our launch we have had over 230 CS Patients participate in the registry and we just completed our first full data analysis from the data collected from 169 participants who completed all of the surveys in the registry. This is the first global Natural History Study addressing Chondrosarcoma. For the past few weeks we have been sharing major findings (one result at a time) to help both the sarcoma / oncology medical profession and the CS patient community understand and use these results towards building developing better practice / interventions as well as better research and clinical trials. This week we examine treatment patterns and reveal that surgerical interventions are typically the first and most utilized treatment intervention.

    Results: Most patients received at least one surgery (75.7%) with similar rates between the cohorts (81.3% conventional, 75.0% non conventional), a Second surgery was provided to 22.5% of the sample, while the third surgery received 12.4% of patients. Patients with Conventional Chondrosarcoma reported they had a higher rate of second and third surgery (34.4% and 28.1%) compared to non-conventional (13.5% and 0.0%).The most common surgeries were resections (58.6%), followed by metallic replacement surgery (17.2%), amputations (7.8%), and curettage (7.8%). Surgical complications occurred in 17.2% of patients treated with such interventions.

    Conclusions: The data from the Chondrosarcoma Patient Registry confirm that surgery is the first and most utilized treatment intervention for chondrosarcoma for both conventional and non-conventional subtypes. In some cases a second and even a third surgery was reported. In the next few weeks we will examine post-surgical interventions and their outcomes. Last week we revealed that the Chondrosarcoma Patient Registry found that almost a third (32.5%) chondrosarcoma patients had disease recurrence. Metastasis was reported in 29.0% of chondrosarcoma patients. It is complicated and difficult to draw definitive conclusions, but if you take the self-reported data at face value, it appears that surgical interventions are effective in preventing disease progression in 38.5% of chondrosarcoma patients.

    Your participation is essential. Be A Part of the Chondrosarcoma Patient Registry.
    To Register: https://chondrosarcoma.iamrare.org/

    It is not too late to sign up to participate in the Chondrosarcoma Patient Registry. The register is open at any time for CS Patients or Caregivers to go on-line and complete 9 surveys which will take less than an hour to complete. We need you to share your journey and help progress research in chondrosarcoma.

    The Chondrosarcoma Patient Registry creates a platform for patients around the world to strengthen their voices and share information about this rare bone cancer. This global resource will provide data for researchers to use to advance drug development and treatment options and help improve patient care. The patient information that the registry collects will help give direction to scientists on areas in which to focus their research efforts, and to hopefully allow clinicians to see trends in patient responses to treatment for chondrosarcoma. The hope for the future is to illuminate treatments that have had some success that may become the standard of care for this rare bone cancer.