An organization called TGCT Support wants to find out more about a rare tumor disease called Tenosynovial Giant Cell Tumor (TGCT), formerly called pigmented villonodular synovitis (PVNS) To collect this information, TGCT Support has created this survey. The purpose of this survey is to collect and store medical information and other information from individuals with the same disease that share commonalities such as molecular targets, treatments, or other factors. Information from patients in this survey will be used for medical research to better understand TGCT. Scientists studying TGCT need more accurate, real-world information to understand how these diseases affect people. Being in this study will not directly benefit you. Information from this study might help researchers understand TGCT better and that may help others in the future. This survey specifically aims to share detailed medical and other information with researchers, while still protecting your privacy. This is done by hiding the name, contact and other "identifying" information from the researchers. We call this information "de-identified" because it has been removed of all personal identifiers. Your personal information (such as your name, email, or other information that identifies you or your family) will be labeled with a code number and stored in a secure place and protected with a password. Only authorized people will know the code and be able to identify you if needed. This data is stored by TGCT Support, where it is backed up to an external hard drive. The de-identified information will be used in aggregate only. Because this captures longitudinal data on patients, the data will be maintained for as long as the registry is active or until you withdraw from it. This survey is expected to take 15-30 minutes. It may take longer if you have had more treatment options. It can be saved and you can come back at a later time. If you have any questions about or do not understand something in this survey, you should contact [email protected] for any questions, comments, or concerns. There is no compensation for this study. This study should not involve any physical risk to you. There is a risk of loss of confidentiality of your information. Please email [email protected] if you would like to know more about how your information will be protected while you are in this study. Your participation in the registry is voluntary. The care you receive from your regular doctor will not be affected in any way, whether or not you decide to be in the registry. If you want to stop being in the registry, email [email protected]. If you decide to withdraw from the registry, the researcher may ask you some questions about being in the registry. The investigator can remove you from the registry at any time, even if you want to stay in the registry. You can still take part in other TGCT Support activities even if you choose to leave this registry.
