Prospective Study of Antiplatelet and Anticoagulation Therapy in Hereditary Haemorrhagic Telangiectasia

What this Trial Is About

Researchers are evaluating how patients with Hereditary Hemorrhagic Telangiectasia (HHT), also known as Rendu-Osler Disease, tolerate anticoagulant and antiplatelet treatments in real-life settings. The study aims to compare the first three months of treatment exposure to the three months before starting treatment to understand which therapies are best tolerated or if they are equivalent. There are currently no established recommendations for using these treatments in Rendu-Osler Disease, making this research important for urgent or vital care situations. This is a single-arm study where patients receive anticoagulant and/or antiplatelet treatments as determined by their doctors, not by the study. Participants will be followed for two years with biological monitoring, including ferritin and hemoglobin levels. They will also complete questionnaires assessing the severity of nosebleeds (Epistaxis Severity Score) and their quality of life related to HHT (QoL-HHT). During the study, participants will be monitored for transfusions or intravenous iron use, bleeding events, hospitalizations related to bleeding or thrombosis, and digestive bleeding or other hemorrhagic accidents. Assessments will occur at various times up to two years, including measurements of biological parameters, epistaxis severity, and quality of life. The main outcome measured is the number of transfusions or intravenous iron needed within three months after starting anticoagulant or antiplatelet therapy.

Prospective Study of Antiplatelet and Anticoagulation Therapy in Hereditary Haemorrhagic Telangiectasia