Chondrosarcoma Patient Registry 2.0,,Second Data Analysis to Begin on September 1
The CS Foundation is working with NORD: National Organization for Rare Diseases to develop a Patient Registry / Natural History Study which was launched 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.
If we are to make a difference, find cures and stop the disease progression, we must do this together. Patients and caregivers have a vital role and the patient registry is a tool to find solutions. The patient registry is both prospective and retrospective. If you are not included in the Chondrosarcoma Patient Registry, we strongly encourage you to register. We want to include patients that range from those who are newly diagnosed to those living years with this rare disease.
We also want to include chondrosarcoma patients that lost their battle by including answers to survey questions through a designated family member or caregiver. For participants who completed the first data set and have passed away, we would ask that a caregiver step-in to complete the follow surveys so that their journey can also be documented.
We recently launched follow-up surveys for the Chondrosarcoma Patient Registry. This second set of surveys examines results from our first analysis we completed last June 2024. We have spent over 6 months analyzing the data and based on the results we identified additional questions that needed further investigation as well as other questions and subjects that were not addressed in our first set of surveys. This follow-up survey will provide an in-depth and comprehensive analysis of your patient journey with chondrosarcoma and will add a lot more data in our efforts to enhance chondrosarcoma research, clinical trials and improve medical practices.
To date we have 262 participants in the registry and 108 have completed the second set of surveys. We need the remaining participants to complete the surveys by August 29 to be included in the data analysis which will be shared at our upcoming Think Tank and the CTOS Annual Meeting in November.
We have learned a tremendous amount regarding our patient journey with recommendations for improving research, clinical trials and medical practice. Our goal is to enroll as many patients, caregivers or their parents or legal guardians, as possible. Combined with the input of experts, this will ensure that our surveys will collect the information necessary to advance research and tell the stories of patients with chondrosarcoma. The objective is to help fill in the missing information researchers and medical experts need to advance research, find effective care, viable clinical trials and one day, find a cure. We are off to a great start and with your help we can assist in the process by completing the surveys.
Please go to https://chondrosarcoma.iamrare.org
For those who completed the first data set, your username and password should already be saved in the system. Once in, scroll down until you see the new surveys (#10) starting with “Diagnosis and Misdiagnosis.” There are 8 additional surveys that you can complete at your own pace but can typically be completed in less than an hour.
If you have any questions, please e-mail Jeff Kramer at csregistry He will respond quickly to any requests and will address any problems or concerns you have in completing the surveys.