We are all in this together. Reaching out to increase enrollment in the Chondrosarcoma Patient Registry
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. We want to encourage you complete the surveys on the registry. You are among a small group of CS patients / survivors or designated caregivers who have provided your informed consent but have not completed the surveys.
We are reaching out because we need you to share your journey and help progress research in chondrosarcoma. 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 get 300 enrolled in the registry by mid-October and we are making progress to reach that goal. So far 143 enrolled, with 80 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 https://chondrosarcoma.iamrare.organd click the Take Survey button for each survey under the Chondrosarcoma Patient Registry study. Please contact me if you lost your user name and / or password and I can help you reset.
If you have any questions or need assistance in completing the surveys, or in obtaining your pathology and/or genomic sequencing reports, please contact Jeffrey Kramer, the Principal Investigator 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 appreciate your interest in our study and 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.
We look forward to hearing from you.