A Sneak Peek at the Chondrosarcoma Patient Registry: Indications to Advance the Diagnostic Protocol

The Chondrosarcoma Foundation in partnership with NORD® launched the Chondrosarcoma Patient Registry on March 1. 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 to help improve patient care: https://chondrosarcoma.iamrare.org

From March 1 – May 27; 135 CS patients have signed up to participate in this global natural history study. Out of the 135 registered we have 64 CS participants who completed all the self-report surveys. There are over one-hundred questions and variables to examine and explore, and we need to obtain more participation to get a representative sample for definitive results and to do a “deep dive” statistical analysis to determine trends and cause-effect relationships. Nevertheless, we wanted to take a sneak peek at what we have obtained so far and share preliminary results for improving the diagnosis and treatment of chondrosarcoma.


A small sample of fifty-six (56) responses indicates that 54% of those diagnosed with chondrosarcoma were first misdiagnosed. If this is true, because chondrosarcoma is rare you have less than a 50% chance of getting an accurate diagnosis. This delay could result in disease progression. We need a larger sample / group to confirm this result and we are aware of the challenges, complexity, and difficulty of making an accurate diagnosis of chondrosarcoma. More improvements as shown below are needed to become part of the diagnostic protocol.