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. 2020 Sep;26(5):773-778.
doi: 10.1111/hae.14089. Epub 2020 Aug 3.

Registry of patients with congenital bleeding disorders and COVID-19 in Madrid

María Teresa Álvarez Román  1 , Nora Butta Coll  1 , Sara García Barcenilla  1 , Lourdes Pérez González  2 , Ivan de la Plaza Collazo  2 , Hortensia De la Corte Rodríguez  3 , Jose A Romero Garrido  4 , Monica Martín Salces  1 , María Isabel Rivas Pollmar  1 , Tamara Cebanu  1 , Elena González-Zorrilla  1 , Paula Acuña  1 , Elena Monzón Manzano  1 , Emérito Carlos Rodríguez Merchán  5 , Roberto Trelles Martínez  1 , María J Blanco Bañares  1 , Mar Gutiérrez Alvariño  1 , Victor Jiménez Yuste  1   6
Affiliations

Registry of patients with congenital bleeding disorders and COVID-19 in Madrid

María Teresa Álvarez Román et al. Haemophilia. 2020 Sep.

Abstract

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, two rare bleeding disorders and 28 carriers of haemophilia). A telephone survey was used to collect the data.

Results: Forty-two patients presented symptoms suggestive of infection by COVID-19, and in six 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 recognized 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-2 presented a mild course of the disease that did not require admission. Their identification and treatment by a specialist team from a Haemophilia Treatment Center are 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.

Keywords: COVID-19; haemophilia A; rare bleeding disorders; telemedicine; von Willebrand disease.

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Conflict of interest statement

Drs. Álvarez‐Román and Jiménez Yuste have participated as speakers, in advisory boards and sponsored symposia with Novo Nordisk, Takeda, Roche, Pfizer, Octapharma, Amgen, Novartis, CSL Behring and Sobi. Dr De la Corte and EC Rodríguez Merchán have participated as speaker in sponsored symposia with Pfizer and Takeda. García‐Barcenilla has participated as speaker and sponsored symposia by Novo Nordisk, Takeda, Roche, Pfizer, Novartis and Sobi, and in advisory boards with Novo Nordisk, Takeda, Roche, Pfizer, CSL Behring and Sobi. Monzón Manzano holds a predoctoral fellowship from Fundación Española de Trombosis y Hemostasia (FETH‐SETH). The rest of the authors have not conflict of interest to declare.

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