Join Us in Taking A First Look at the Chondrosarcoma Patient Registry

This coming Monday, May 22, we are going to do our first analysis of responses to the survey and take a first look at identifying trends and cause-effect relationships. Your responses to the survey questions are vital to this effort. We want to encourage you to complete the survey questions this week so we can include your responses in our first report.

Entering your data is easy. Just log in to your account at https://chondrosarcoma.iamrare.org and click the Take Survey button for each survey under the Chondrosarcoma Patient Registry study.

If you have any questions or need assistance in completing the surveys, or in obtaining your pathology and/or genetic sequencing report, please contact Jeffrey Kramer, the Principal Investigator at csregistry@csfshayna.org

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.