Long-Term Study of Urothelial and Rare Genitourinary Tract Cancers to Understand Their Natural History and Treatment

What this Trial Is About

Researchers are studying tumors in the genitourinary GU tract, including cancers of the kidney, bladder, prostate, testicles, penis, and rare types such as neuroendocrine cancers. This study aims to better understand both common and rare urinary tract cancers, especially those so rare that they are not often included in treatment studies or tissue banks. The goal is to gather detailed information about the natural history and characteristics of these cancers to improve diagnosis and treatment. Participants will be part of a long-term, multi-center observational study where their medical histories will be collected and followed over time. They may provide tissue samples, blood, and urine for scientific studies, including genetic testing. Imaging scans of the chest, abdomen, and pelvis may be done, sometimes with contrast agents. Optional tumor biopsies may be performed up to twice a year to collect samples. Participants will receive recommendations about cancer management and treatment and can ask questions throughout the study. During the study, participants will have physical exams, provide clinical photographs of skin lesions, and complete surveys about family cancer history. Follow-up visits will occur frequently, and if participants cannot visit the study center, their home doctors will be contacted to continue monitoring. The study will track disease progression, treatment responses, and other clinical information over the participants lifetimes. The primary outcome measure is understanding the natural history of urothelial and rare genitourinary cancers.

A Multi-Center Natural History of Urothelial Cancer and Rare Genitourinary Tract Malignancies