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Chondrosarcoma CS Foundation, Inc.

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    Call for Action: Please enroll in the Chondrosarcoma Patient Registry

    We need you to share your journey and help progress research in chondrosarcoma. Your participation is essential. 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.

    When we are successful in getting a large number of participants to complete the surveys, we will perform a large scale data analysis to get definitive answers on demographics, family and medical history, treatment interventions and outcomes on each sub-type of chondrosarcoma. Our goal is to enroll 300 participants in the registry by mid-October and we are making progress to reach that goal. So far we are half-way to our goal; 150 are enrolled, with 108 completing the surveys. Your effort to complete the questionnaires will help make a huge difference.

    Entering your data is easy. Just log in to your account at info

    In the short time we have had the registry active, we are learning more than we have known and need to learn so much more. We will keep you posted on the progress we are making with this first global natural history study with periodic reports.

    We are in this together; if we are going to make a difference we need your participation. With your help we look forward to the possibility of new insights, improved research, clinical studies and medical treatment and hopefully one day soon, a cure.

    Sincerely,
    Jeffrey Kramer, President / Principal Investigator
    Chondrosarcoma Foundation