For Researchers

Welcome to the Chondrosarcoma Patient Registry. Individuals diagnosed with chondrosarcoma (or their legally authorized representatives) who participate in the registry will be asked to enter information about their experience living with chondrosarcoma. Data will be collected at the start of the study (baseline), and at twelve-month time intervals. Participants will enter data in response to questionnaires and upload documents for data extraction and confirmation. Two relevant documents include pathology reports to confirm diagnosis and genetic sequencing reports to examine biomarkers and phenotypes. Questionnaires will address topics on demographics, quality of life, medical history, family history, diagnosis, disease phenotypes, disease-related events, personal experience with chondrosarcoma, general health status, reoccurrence, metastasis, surgeries, treatments and medications. In addition, the Chondrosarcoma Patient Registry will include retrospective surveys of those who passed away from chondrosarcoma with answers reported by living “designated representatives” of the deceased patient.

Those eligible to answer the questions listed below include:

Participant: An individual diagnosed with chondrosarcoma

Legally Authorized Representative: an individual (such as a family member or guardian) who is legally responsible for the healthcare of the Study Participant who is a minor (child under the age of 18) or an adult who is unable to contribute their own data.

Designated Representative: A legal adult who was the caretaker of an individual who passed away from chondrosarcoma, defined as a spouse, parent, sibling, offspring, close relative, close friend, guardian and/or significant other of the individual who had chondrosarcoma and who had knowledge and participated in their medical care.

The Chondrosarcoma Patient Registry collects disease-specific natural history data about individuals with chondrosarcoma, with the goal of improving the understanding of chondrosarcoma and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation

We are interested in sharing our data with you! If you would like access to the Chondrosarcoma Patient Registry data for a research project, please contact our registry administrator at [email protected] for more information. Access to Chondrosarcoma Patient Registry data is contingent upon project approval by the Chondrosarcoma Patient Registry Advisory Board.