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Chondrosarcoma CS Foundation, Inc.

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    Chondrosarcoma Patient Registry launches a set of follow-up surveys

    Chondrosarcoma Patient Registry 2.0 with a new set of follow-up surveys

    https://chondrosarcoma.iamrare.org

    We are excited to announce that we’ve received IRB approval to launch a set of new surveys for patients and caregivers who completed the first set of surveys since our initial launch in March 2023. This second set of surveys examines results from our first analysis completed last June that needed further investigation as well as other questions and subjects that were not addressed in our first analysis of the Chondrosarcoma Patient Registry.

    Participants who completed the first 8 surveys in the registry have been asked to go back to the Patient Registry and complete the follow-up surveys. It takes only an hour, but it will provide more of an in-depth and comprehensive analysis of the patient journey with chondrosarcoma.

    For those unfamiliar with our registry, the Chondrosarcoma Foundation in partnership with the National Organization for Rare Disorders (NORD®) launched the Chondrosarcoma Patient Registry two years ago. The patient registry currently has 232 participants. It creates a platform for patients around the world to strengthen their voices and provide critical information about their experiences living with this rare bone cancer. This global resource will provide data for researchers to use to advance drug development and treatment options to help improve patient care.

    We have learned a tremendous amount regarding our patient journey with recommendations for improving research, clinical trials and medical practice. Some of our results are highlighted in the Poster we presented at the CTOS conference in November 2024 in San Diego.

    Our goal is to enroll as many patients, or their parents or legal guardians, as possible. Combined with the input of experts, this will ensure that our surveys will collect the information necessary to advance research and tell the stories of patients with chondrosarcoma. The objective is to help fill in the missing information researchers and medical experts need to advance research and one day, find a cure.

    We invite and encourage all chondrosarcoma patients and caregivers to go to https://chondrosarcoma.iamrare.org and complete the first set of surveys in the chondrosarcoma patient registry. Once you complete the first set, you will be notified 3 months later to complete the follow-up surveys.The patient registry is both prospective and retrospective. We want to include patients that range from those who are newly diagnosed to those living years with this rare disease. We also want to include chondrosarcoma patients that lost their battle by including answers to survey questions through a designated family member or caregiver.

    We are reaching out to Sarcoma Specialists, Patient Advocacy Organizations, Medical Institutions, Patients, Family Members and Caregivers across the globe to inform them about the Chondrosarcoma Patient Registry and encourage anyone with a diagnosis of chondrosarcoma to register.

    To access the Chondrosarcoma Patient Registry and for more information, visit: https://chondrosarcoma.iamrare.org

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