To all participants in the Chondrosarcoma Patient Registry:

We just completed an inventory of participants in the Chondrosarcoma Patient Registry and noticed that you are eligible to complete are follow-up surveys. All you have to do is to go back on the registry: https://chondrosarcoma.iamrare.org enter your username and password and once into the registry page with the surveys scroll down to gain access to those surveys. It should take less than an hour to complete them.

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. For participants who completed the first data set and have passed away, we would ask that a caregiver step-in to complete the follow surveys so that their journey can also be documented.

If you have not enrolled in the Chondrosarcoma Patient Registry, we invite you to do so. Go to https://chondrosarcoma.iamrare.org and follow the prompts to register and complete the first set of surveys.

This second set of surveys examines results from our first analysis we completed in June 2024. We have spent over 6 months analyzing the data and based on the results we identified additional questions that needed further investigation as well as other questions and subjects that were not addressed in our first set of surveys. This follow-up survey will provide an in-depth and comprehensive analysis of your patient journey with chondrosarcoma and will add a lot more data in our efforts to enhance chondrosarcoma research, clinical trials and improve medical practices.

We want to get as many of the follow-up surveys completed in the next 30 days so that we have time to analyze and report on the data to the research and clinical trial community at CTOS: Connective Tissue Oncology Society conference as well as report the results to you.

Please go to https://chondrosarcoma.iamrare.org

Your username and password should already be saved in the system. Once in, scroll down until you see the new surveys (#10) starting with “Diagnosis and Misdiagnosis.” There are 8 additional surveys that you can complete at your own pace but can typically be completed in less than an hour.

If you have any questions, please e-mail me at [email protected] I will respond quickly to any requests and will address any problems or concerns you have in completing the surveys.

Thank you in advance for taking the time to complete the follow-up surveys. Your participation in this effort will provide a more detailed look of your patient journey and allow us to address research, clinical trial initiatives and better medical practices in treating Chondrosarcoma. You will make a difference.