Mullheim Im Markgraflerland

Researchers are evaluating the management of patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD) who are considered for treatment with tolvaptan. This prospective, observational, multicenter registry aims to collect real-world data on how tolvaptan treatment is used and managed in routine clinical practice across multiple sites in Germany. The study includes patients referred for evaluation, those planned for treatment, and those already receiving tolvaptan, providing extensive insight into treatment patterns and outcomes. Patients enrolled in this registry are monitored through standard clinical care without additional trial-related visits, reflecting the observational nature of the study. Data collection includes demographic, clinical, laboratory, and imaging information such as MRI and ultrasound results. Patients are provided with diaries to document tolvaptan dosing and any side effects, which are collected annually. Questionnaires assessing medication use, complications, and quality of life are also completed yearly. Data on tolvaptan dosing, dose adjustments, urine osmolarity, adverse effects, hospital admissions, and kidney-related symptoms are recorded over a 10-year period. Participants typically have yearly assessments capturing biochemical parameters, imaging studies, and clinical events related to ADPKD. The study tracks drug dosing, treatment duration, and reasons for discontinuation. No additional blood samples or imaging procedures beyond routine care are required. This long-term monitoring aims to better understand treatment management and outcomes in a real-life setting for patients with ADPKD taking tolvaptan.