Bleeding Disorder of Unknown Cause Study in the Netherlands Understanding unexplained bleeding and its impact on daily life and health

What this Trial Is About

This research aims to better understand unexplained bleeding in individuals diagnosed with a bleeding disorder of unknown cause BDUC. It focuses on why these patients have an increased tendency to bleed and how this affects their daily life and overall health. The study addresses important questions about the underlying mechanisms of bleeding, the impact on quality of life, and how care is currently provided and can be improved for these patients. Participants aged 12 years and older with an increased bleeding tendency who remain undiagnosed after standard lab tests will be enrolled across Hemophilia Treatment Centers in the Netherlands. The study is observational and involves blood sampling for advanced hemostasis and genetic testing, as well as completing questionnaires. Participants will be followed over 10 years to assess changes and effects of bleeding symptoms. During the study, participants will undergo blood tests and provide detailed health information through questionnaires. Researchers will monitor bleeding symptoms, severity, physical activity, patient activation, and healthcare satisfaction over time. The main outcomes measured include health-related quality of life and diagnostic findings. The study also evaluates care pathways and aims to develop improved diagnostic and treatment strategies based on collected clinical, laboratory, and patient-reported data.

Bleeding Disorder of Unknown Cause in the Netherlands