National Registry Study on Treatment, Quality of Life, and Outcomes for Patients with Blood Cancers in Germany RUBIN

What this Trial Is About

Researchers are establishing a national, prospective, longitudinal, multicenter registry platform in Germany to collect consistent data on patient characteristics, molecular diagnostics, treatments, and disease progression for patients with hematological malignancies. This platform aims to document treatment patterns, analyze the effects of new therapies, and identify areas needing improvement in routine care. The study will also collect patient-reported outcomes to understand health-related quality of life. Participants receive systemic treatments chosen by their physicians according to their needs. The registry includes patients with various lymphoid malignancies such as Chronic Lymphocytic Leukemia, Diffuse Large B-cell Lymphoma, Follicular Lymphoma, Mantle Cell Lymphoma, Marginal Zone Lymphoma, and Waldenstrms Macroglobulinemia. Data on treatments, radiotherapies, surgeries, and clinical outcomes are recorded over time without altering the usual care. During the study, participants provide information at inclusion about their health status, previous treatments, and clinical characteristics. Follow-up includes continuous documentation of systemic therapies and outcomes, with health-related quality of life assessed for up to one year. Researchers measure treatment courses over five years and monitor progression-free survival, overall survival, and patient-reported quality of life, supporting a comprehensive understanding of real-world treatment effects and patient experiences.

Registry Platform Hematologic Malignancies (RUBIN) - Extension of Tumor Registry Lymphatic Neoplasms