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Due to increasing of life expectancy, patients with von Willebrand disease are exposed to age-related pathologies such as cancer or cardiovascular diseases. Management of thrombotic events is challenging given the inherent bleeding risk in von Willebrand disease. Few data are currently available in the literature.
The aim of the study is to describe the frequency and nature of arterial and venous thromboembolic events and atrial fibrillation in patients with von Willebrand disease in the West of France.
The investigators will perform a retrospective multicenter study conducted in the von Willebrand population of the French West. Von Willebrand adult patients followed in one of the French West medical centers participating in the study, who presented deep vein thrombosis, pulmonary embolism, ischemic stroke, transient ischemic attack, acute coronary syndrome, acute limb ischemia, atrial fibrillation, arteriopathy of the lower limbs, angina will be eligible.
Von Willebrand disease is the most common hereditary bleeding disorder. Due to the development of therapies, life expectancy and life quality are increasing in affected patients. However, certain treatments and/or certain comorbidities associated with venous and arterial thrombotic risks may be present in these patients. In the general population, venous thromboembolic disease, arterial thrombosis and atrial fibrillation are frequent. Their management requires the use of antiaggregants and anticoagulant molecules, themselves associated with a bleeding risk. Few data are currently available in the literature concerning the occurrence of venous and arterial thromboembolic events in patients with von Willebrand disease and their management, in the face of a hemorrhagic risk inherent to their pathology and its increase by anti-aggregant treatments and anticoagulants.
The aim of the study is to describe the frequency and nature of arterial and venous thromboembolic events and atrial fibrillation in patients with von Willebrand disease in the West of France.
The investigators will perform a retrospective multicenter study on data conducted in the French West. The study population is composed of patients with von Willebrand disease followed in a reference center in the French West, have consented to be included in the BERHLINGO database (Base d'Etude et de Recherche pour Les INvestigateurs en Hémostase du Grand-Ouest), and who presented deep vein thrombosis, pulmonary embolism, ischemic stroke, transient ischemic attack, acute coronary syndrome, acute limb ischemia, atrial fibrillation, arteriopathy of the lower limbs, angina. Data about von Willebrand disease, risk factors, event, treatment such as antiaggregants and anticoagulants and complications such as hemorrhage or recurrence, will be collected.
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| Measure | Description | Time Frame |
|---|---|---|
| To describe the frequency of arterial and venous thromboembolic events and cardiac arrhythmia due to atrial fibrillation in patients with Willebrand disease in the Greater West. | Occurrence of a thromboembolic event validated by an adjudication committee | 12 months |
| To describe the nature of arterial and venous thromboembolic events and cardiac arrhythmia due to atrial fibrillation in patients with Willebrand disease in the Greater West. | Occurrence of a thromboembolic event validated by an adjudication committee | 12 months |
| Measure | Description | Time Frame |
|---|---|---|
| Identify potential risk factors | identify whether certain risk factors are more prevalent in the population than others | 12 months |
| Number of revascularisation procedures, anticoagulants and antiaggregants prescribed for these conditions |
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Inclusion Criteria:
Exclusion Criteria:
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Patients with von Willebrand disease followed in a reference center in the French West and who have consented to be included in the BERHLINGO database (Base d'Etude et de Recherche pour Les INvestigateurs en Hémostase du Grand-Ouest) with a medical history of deep vein thrombosis, pulmonary embolism, ischemic stroke, transient ischemic attack, acute coronary syndrome, acute limb ischemia, angina, obliterating arteriopathy of the lower limbs or atrial fibrillation.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Brigitte PAN PETESCH | Contact | 02.98.22.36.50 | brigitte.pan-petesch@chu-brest.fr | |
| Sara ROBIN | Contact | sara.robin@chu-brest.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU d'Angers | Not yet recruiting | Angers | 49933 | France |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 42219913 | Derived | Granottier A, Trin K, Robin S, Trossaert M, Ardillon L, Tabaux D, Rose J, Beurrier P, Guillet B, Aoubiza I, Pierre-Jean M, Repesse Y, de Moreuil C, Pan-Petesch B. Venous and Arterial Thrombo-Embolic Events in Patients With von Willebrand Disease From Western France: The TWIGO Study. Haemophilia. 2026 May 31. doi: 10.1111/hae.70309. Online ahead of print. |
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All collected data that underlie results in a publication
Data will be available beginning three month and ending five years following the publication
Data access requests will be reviewed by the internal committee of Brest UH. Requestors will be required to sign and complete a data access agreement.
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| ID | Term |
|---|---|
| D014842 | von Willebrand Diseases |
| D002318 | Cardiovascular Diseases |
| D001281 | Atrial Fibrillation |
| ID | Term |
|---|---|
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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Prescription of anticoagulant and/or antiaggregant treatment
| 12 months |
| Evaluate the nature of treatments prescribed for these pathologies: revascularisation procedures, anticoagulants and antiaggregants | Revascularisation procedure (endovascular or surgical) | 12 months |
| Evaluate the tolerance of these treatments | Occurrence of clinical haemorrhage | 12 months |
| Evaluate the effectiveness of these treatments | Occurrence of a cardio-embolic event | 12 months |
| Evaluate the effectiveness of these treatments | Occurrence of a thromboembolic recurrence | 12 months |
| Evaluate the effectiveness of these treatments | Death from haemorrhage and/or thromboembolic causes. | 12 months |
| CHU de Brest | Recruiting | Brest | 29609 | France |
|
| CHU de Caen | Not yet recruiting | Caen | 14033 | France |
|
| CH le MANS | Not yet recruiting | Le Mans | 72037 | France |
|
| CHU de Nantes | Not yet recruiting | Nantes | 44093 | France |
|
| CHU de Rennes | Not yet recruiting | Rennes | 35033 | France |
|
| D020147 | Coagulation Protein Disorders |
| D001791 | Blood Platelet Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D001145 | Arrhythmias, Cardiac |
| D006331 | Heart Diseases |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |