Evaluation of Antiplatelet and Anticoagulant Treatment Tolerance in Adults with Hereditary Hemorrhagic Telangiectasia

What this Trial Is About

Researchers are investigating how well anticoagulant and antiplatelet treatments are tolerated in patients with Hereditary Hemorrhagic Telangiectasia HHT, also known as Rendu-Osler Disease. This study aims to compare the early exposure period of these treatments first three months to a reference period without treatment last three months before treatment start to better understand which therapies are best tolerated or if they have similar effects. Currently, there are no clear guidelines for using these treatments in HHT patients. Participants will be observed over a two-year period where the use of anticoagulant andor antiplatelet therapy is monitored without the study conditioning treatment choice. Biological measures such as ferritin and hemoglobin levels will be tracked, along with assessments of bleeding severity using the Epistaxis Severity Score ESS and health quality via the QoL-HHT questionnaire. The study involves one group of participants receiving their prescribed treatments as part of usual care. During the study, participants will undergo regular monitoring of blood parameters and clinical events, including transfusions, bleeding episodes, and thrombosis. Quality of life and bleeding severity will be evaluated at multiple time points up to 104 weeks. The main outcome measured is the number of transfusions or intravenous iron treatments three months after starting anticoagulant or antiplatelet therapy. The study will also assess other biological and clinical outcomes, ensuring ongoing follow-up for two years after enrolling in the study.

Prospective Study of Antiplatelet and Anticoagulation Therapy in Hereditary Haemorrhagic Telangiectasia