What is a registry?

A registry is a centralized source of data gathered from patient’s clinical information that continually expands as patients are enrolled. Through this growing registry we are able to capture data from a large number of patients with varying demographic backgrounds and pool it together in a way that will allow for better characterization and understanding of TFE RCC.

Although it is a rare type of cancer, TFE RCC, largely thought of as a cancer of children, adolescents and young adults, accounts for approximately 1/2 of all pediatric RCCs and up to 5% of adult RCCs. Currently, there are no formal treatment recommendations available for TFE RCC and no dedicated therapeutic trials have been conducted. Limited retrospective studies have been performed previously, but more data gathered over a long-term period of time and from a large number of patients is needed to gain better insight into TFE RCC. The TRRI registry is aimed to provide this long-term follow up needed to better understand prognosis and outcomes of disease, and the consortium to conduct hypothesis driven research to develop better treatments.

TRRI registry will:
  1. Recruit patients diagnosed with TFE RCC
  2. Enroll patients into the registry
  3. Gather clinical, demographic, radiologic, and pathologic data for enrolled participants on the registry
  4. Provide patients an opportunity to donate specimens
  5. Establish a pathway to collaborate with researchers around the world to meet our long-term goal of developing better treatment options and outcomes for TFE RCC patients everywhere