Mullheim Im Markgraflerland

Researchers are observing patients with Autosomal Dominant Polycystic Kidney Disease ADPKD to study the management and treatment patterns involving tolvaptan. This multicenter registry collects real-world data from patients who are being evaluated for tolvaptan treatment, are planned to start it, or are already receiving it. The study aims to understand drug dosing, titration, urine osmolarity, treatment duration, and discontinuation rates over a ten-year period. Participants include ADPKD patients from various centers, including nephrology practices and a self-help group network. At enrollment, detailed clinical, laboratory, and imaging data such as MRI and ultrasound are gathered. Patients document their tolvaptan dose and side effects in diaries, and complete yearly questionnaires and quality of life assessments. Data capture occurs annually, reflecting biochemical and imaging findings, medication dosing, adverse events, hospital admissions, and kidney-related complications. During the study, participants are regularly seen approximately once a year without additional trial-specific visits. The registry collects clinical information such as demographics, family history, genotype, co-morbidities, medications, blood pressure, and complications. Laboratory tests include kidney function and urine measurements, while imaging studies focus on kidney volume. Safety and effectiveness are monitored via patient diaries and questionnaires, with data collected continuously for up to ten years to assess long-term treatment patterns and outcomes.