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 from patients.
If you have a patient you believe would wish to enroll please print out a copy of this consent form and informational handout and provide it to your patient. You may contact the registry on your patient’s behalf or direct the family to contact the registry to set up a time for a phone consent with our research coordinator. Should your patient wish to participate in the registry, the following procedure will be followed with them directly by our research coordinating team to obtain their consent:
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, the patient/family will receive a copy of the informed consent by email. It is IMPORTANT that the patient/family do not sign the consent forms emailed to them until after they have spoken with a member of the registry staff on the scheduled phone call. They 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, the patient will be enrolled and registry staff will work with the patient’s hospital to collect the relevant medical information needed for the Registry. If the patient is having an upcoming surgical procedure and they or their family 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.