Patients of all ages with a diagnosis of TFE Renal Cell Carcinoma are eligible to enroll in the registry study. The registry collects clinical data from medical records from all patients who agree to participate and tissue samples will be collected if available form patients.
If you are interested in enrolling yourself or your child in the registry, please follow the procedure outlined below:
1) Contact the registry at 844-RCC-TRRI or TRRI@cchmc.org
2) Schedule a date/time to discuss the TRRI Registry and enrollment process (this phone call will take approximately 15-30 minutes)
3) Prior to the scheduled call, you will receive a copy of the informed consent by email. It is IMPORTANT that you do not sign the consent forms emailed to you until after you have spoken with a member of the registry staff on the scheduled phone call. You may use the link below to see a copy of the consent prior to contacting the registry (this version will not have a signature page).
4) Sign and date the consent form to enroll in the registry and return the signed form to the TRRI Registry office by email, fax, or mail.
5) Upon receipt of the consent forms, you or your child will be enrolled and registry staff will work with yours or your child’s hospital to collect the relevant medical information needed for the Registry. If you or your child are having an upcoming surgical procedure and wish to donate any leftover tissue to the registry, please notify us and registry staff will work with your hospital for the proper preparation and shipment of samples.