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INTRODUCTION: We present the first registry of patients with congenital bleeding disorders and COVID‐19. The study has been carried out in the Community of Madrid, which has the highest number of cases in Spain. The objective is to understand the incidence of COVID‐19, the course of the disease if it occurs and the psychosocial and occupational impact on this population. METHODS: We included 345 patients (246 of haemophilia, 69 of von Willebrand Disease, 2 rare bleeding disorders and 28 carriers of haemophilia). A telephone survey was used to collect the data. RESULTS: 42 patients presented symptoms suggestive of infection by COVID‐19 and in 6 cases the disease was confirmed by RT‐PCR. The cumulative incidence of our series was 1.73%. It is worth noting the complexity of the management of COVID‐19 in two patients on prophylaxis with non‐factor replacement therapy. Adherence to the prescribed treatment was maintained by 95.5% of patients. Although 94% were independent for daily living activities, 42.4% had a recognised disability and 58% required assistance, provided by the Madrid Haemophilia Association (Ashemadrid) in 75%of cases. Only 4.4% of consultations were held in person. CONCLUSIONS: Patients with congenital bleeding disorders infected with SARS‐CoV‐2presented a mild course of the disease that did not require admission. Their identification and treatment by a specialist team from a Haemophilia Treatment Center is essential to make a correct assessment of the risk of haemorrhage/thrombosis.COVID‐19 had a major impact on the psychosocial aspects of these patients which must be remedied with recovery plans.
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Registry of patients with congenital bleeding and COVID‐19 in madrid
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