Translocation renal cell carcinoma (tRCC) is a rare subtype of renal cell carcinoma occurring in less than 5 percent of patients. Initially found primarily in children, incidence of tRCC found in adults is rising.
Because it is so rare, research to identify the best treatments for tRCC patients is severely lacking. The Translocation RCC Research Initiative (TRRI) is working to change that! Laura Loughlin, KCCure Director of Patient Engagement, had the opportunity to speak with Dr. James Geller, a tRCC expert at Cincinnati Children’s Hospital and leader of the TRRI.
What is the TRRI?
The TRRI is a global team of doctors and researchers dedicated to tRCC research to find new and better treatments and improve patient outcomes. Their work includes a registry study, clinical and biological testing, tumor modeling, and novel drug testing all focused specifically on tRCC.
The Goals
- Registry– By filling a critical gap and prospectively collecting data from both pediatric and adult patient populations, we will be better able to characterize clinical behavior and treatment for patients with TFE RCC.
- Tumor Model Development– Tumor models are an excellent tool used to study the causes of cancers and an instrument for testing new drugs.
- Drug Discovery– Through the use of drug screens with developed tumor models, and investigation into the biology of TFE RCC, the TRRI consortium is invested in identifying novel drug therapies for patients with TFE RCC.
One of the most exciting things about the work being done is that it brings patients and doctors together to help advance research.
How can you contribute?
If you’ve been diagnosed with tRCC, enroll in the TRRI registry. Sharing your information today with the registry is a way to make a difference in research for this rare subtype of RCC. The registry is open to patients of all ages.
- If you are a tRCC patient, or the parent of child with tRCC, contact the registry at 844-RCC-TRRI or TRRI@cchmc.org to schedule a call to discuss the TRRI Registry and enrollment (this phone call will take approximately 15-30 minutes)
- Prior to the scheduled call, you will receive a copy of the informed consent by email. This form would be signed at the end of the call if you choose to proceed. You may use this link to see a copy of the consent prior to contacting the registry.
- During the call, registry staff will review the consent with you and answer any questions you may have. If you wish to proceed with participating, at the end of the call, instructions will be provided on how to properly fill out and sign the consent form and how to return it to the registry.
- Upon receiving your signed informed consent document, registry staff will sign it and return a completed copy to you for your records. This officially enrolls you in the registry.
- The registry team will work with your physicians (or your child’s), and with you, to gather the appropriate medical information for the registry.
- You will have the option to donate leftover tissue from any scheduled procedures. The registry staff will do all the work to coordinate tissue donations.
Information fuels research – signup to update the Registry today!!
Have you been diagnosed with tRCC? Learn more about the different types of renal cell carcinoma and how you can connect with others that share the same diagnosis.
You can also learn about a currently enrolling clinical trial specifically for tRCC patients through our non-clear cell clinical trial chart.
KCCure thanks Dr. James Geller for sharing the work being done by the Translocation RCC Research Initiative. We look forward to sharing updates on the research being done and making a difference in the treatment of tRCC patients.
