Call for Action
Be Part of the First full Analysis of the Chondrosarcoma Patient Registry https://chondrosarcoma.iamrare.org
It is not too late to sign up to participate in the Chondrosarcoma Patient Registry. The Chondrosarcoma Foundation has been preparing to conduct the first full statistical analysis of the Chondrosarcoma Patient Registry. The analysis will focus on detailed patient profiling. In addition, patient characteristics between diagnosed/determined chondrosarcoma sub types will be compared and statistically evaluated. The main study outcomes will aim to thoroughly describe the profile of chondrosarcoma patients. This will include demographic characteristics (age, gender, residence, ethnicity, health plan, education, employment, income, etc.), medical history (personal and family history of cancers, bone conditions, comorbidities, pregnancy, etc.), and treatment exposure (type, regimen, efficacy outcomes, adverse events, discontinuation, clinical trial enrollment, etc.). Additionally, chondrosarcoma characteristics will be analyzed including diagnosis date, type, symptomatology, diagnostics, misdiagnosis, etc.
Your participation is essential.
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.
We have spent the past two months reaching out to CS Warriors and Families to enroll and for those that started the process to complete the 9 surveys in the registry. So far, 225 are enrolled, with 180 completing the surveys. Your effort to complete the questionnaires will help make a huge difference.
Entering the data is easy. Just log in to your account at info@csfshayna.org
Some Early Preliminary Results
In the short time we have had the registry active (since March 1, 2023), we are learning more than we have known and need to learn so much more. For example, we know that we have a lot of work to do to improve the diagnostic protocol. It is becoming very clear that genomic testing needs to become part of the treatment protocol, and yet so far, only 22% of the participants in the registry report having that test. Another statistic we are tracking involves obtaining a full diagnosis. Out of 108 responses, only 43% report knowing their specific sub-type and grade of chondrosarcoma. One possible reason may be that pathologists who provide the diagnosis for chondrosarcoma do not specialize in bone or soft tissue cancers and while they can detect chondrosarcoma, they are unable to provide the sub-type or grade.
As we continue to analyze, evaluate, track, and learn, we will share these results. and will keep you posted on the progress we are making with this first global natural history study with periodic reports.
We are in this together; if we are going to make a difference, we need your participation.
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.
Sincerely,
Jeffrey Kramer, President / Principal Investigator
Chondrosarcoma Foundation