Chondrosarcoma Patient Registry: The Results Are In

The Chondrosarcoma Foundation was the first foundation to be inducted into the NORD IAMRARE Patient Registry 2.0 platform and the 44th Foundation to have a Patient Registry in the platform itself. We were approved by NorthStar IRB in early February 2023, had a soft launch with a few board members participating in early February 2023 and we addressed some errors and made improvements before our official launch on March 1, 2023. Since our launch we have had over 230 CS Patients participate in the registry and we just completed our first full data analysis from the data collected from 169 participants who completed all of the surveys in the registry. This is the first global Natural History Study addressing Chondrosarcoma. Over the next few weeks, we will share major findings (one result at a time) to help both the sarcoma / oncology medical profession and the CS patient community understand and use these results towards building developing better practice / interventions as well as better research and clinical trials.
This is an on-going retrospective analysis of the Chondrosarcoma Patient Registry. The database includes demographic, medical history, diagnostic, clinical, genetic, and patient-reported measures collected from patients or their relatives worldwide (from 19 countries) via the customized survey (IAMRARE® program powered by the National Organization for Rare Diseases). Patients were stratified by sarcoma type in three cohorts – conventional CS (conventional grade 1-3 sub types), non-conventional CS (other sub types), and unknown CS (unspecified chondrosarcoma type). Outcomes were explored in the total sample and statistically compared between conventional and non-conventional CS.
Result #1: Most Chondrosarcoma Patients do not know their Sub type
The total sample consisted of 169 CS patients, with 32 conventional, 52 non-conventional, and 85 unknown. Over half of sample (50.3%) did not know their CS subtype. We need to dig deeper into the reasons on our follow up survey but a possible explanation maybe that CS patients were told they had Chondrosarcoma but not told about their specific subtype. Another reason might be that patients were overwhelmed about their diagnosis of Chondrosarcoma and did not understand their specific subtype.
Demographic Characteristics: The average age of chondrosarcoma patients in the registry was 51 years with an age range from 18-91. Most of participants race was white (88.2%) and most resided in the US (71.6%), although the reach was global with 19 countries participating. The predominant sex was female (69.8%), although the literature implies the disease is more frequent among males. Mainly, patients themselves (85.8%) completed the survey and provided data on their health condition
Clinical Characteristics: Conventional chondrosarcoma was diagnosed in 40.6% of patients with a known subtype (mostly grade 2), while dedifferentiated was the most common non-conventional subtype 36.5%. Before the chondrosarcoma diagnosis, bone disorders occurred in 18.9% of patients, other chronic conditions in 30.2%, and other types of cancer in 13.6%.
Conclusion: Patients need to be better informed about their Chondrosarcoma subtype. As with many cancers, chondrosarcoma has various sub-types. Some are benign and others are very aggressive. Chondrosarcoma is classified by its level of severity and specific location within the body. Patients need to be aware of the severity of their condition to understand, plan and to play an active role in their care along with their medical team.
Subsequent posts on the Chondrosarcoma Patient Registry will address other findings of our first analysis of the Chondrosarcoma Patient Registry including misdiagnosis, recurrence, metastasis, treatment outcomes and a timeline of events between initial symptoms, diagnosis, treatment interventions, and outcomes.
Your participation is essential. Be A Part of the Chondrosarcoma Patient Registry.
To Register:
It is not too late to sign up to participate in the Chondrosarcoma Patient Registry. The register is open at any time for CS Patients or Caregivers to go on-line and complete 9 surveys which will take less than an hour to complete. We need you to share your journey and help progress research in chondrosarcoma.
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.