Update on Chondrosarcoma Patient Registry

The Chondrosarcoma Foundation in partnership with NORD® launched the Chondrosarcoma Patient Registry on March 1, 2023. The Chondrosarcoma Patient Registry is a platform for patients around the world to strengthen their voices and collectively 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.

This is the first time any organization has created a patient registry to address chondrosarcoma on a global scale. At present with two months in, we have 64 participants in the registry. In Mid-May we are going to conduct our first pass into looking at the responses of our participants to get a snapshot of our community, to address knowledge gaps including demographics, family and medical history and to determine if there are any trends and cause and effect relationships. For example, preliminarily (and this is early) we have observed that 60% of those diagnosed with chondrosarcoma were first misdiagnosed. If that is true then we want to dig deeper and find out if being misdiagnosed had an impact on the outcome of care.

The patient information that the registry collects will help give direction to sarcoma specialists and scientists 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 and procedures that have had some success that may become the standard of care for this rare bone cancer.

We want to include your story and encourage your participation in the registry. This is our way of collectively making a 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.

In addition to the surveys, we are trying to obtain two vital medical reports: your pathology report that includes a diagnosis of chondrosarcoma and a genetic sequencing report that indicates what biomarkers exist in the chondrosarcoma cancer cell. We understand that not everyone has these reports or has access to them, however, if you have these reports or can obtain them through your oncologist or medical portal we would like for you to include them in the registry.

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

Will 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.

For more information, visit: https://chondrosarcoma.iamrare.org