National Long-Term Study for Adults with Localized or Metastatic Renal Cell Carcinoma in the Netherlands Collecting Patient Outcomes and Experiences with Optional Participation in Additional Trials

What this Trial Is About

Researchers are conducting a nationwide long-term study called PRO-RCC to collect real-world clinical data, patient-reported outcome measures PROMs, and patient-reported experience measures PREMs for patients with renal cell carcinoma RCC, including both localized and metastatic forms. This study also provides a framework to conduct additional observational and randomized interventional studies within the cohort using a Trial within Cohorts TwiCs design. The study gathers clinical data embedded in the Netherlands Cancer Registry and collects PROMs related to health-related quality of life and optional return-to-work questionnaires, as well as PREMs regarding satisfaction with care. These data are collected online through the PROFILES registry and are accessible to both patients and their treating physicians. Participants may also agree to take part in randomized studies within the cohort. Participants will be monitored for up to five years, with primary outcomes including survival, disease progression, and patient-reported outcomes collected over this period. Secondary outcomes include patient-reported adverse events over two years. The study involves regular collection of questionnaires and clinical data, supporting both observational research and interventional trials within the established cohort.

National PROspective Infrastructure for Renal Cell Carcinoma (PRO-RCC)