{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,27]],"date-time":"2025-10-27T05:05:51Z","timestamp":1761541551517,"version":"3.40.5"},"reference-count":15,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2020,8,3]],"date-time":"2020-08-03T00:00:00Z","timestamp":1596412800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2020,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>We present the first registry of patients with congenital bleeding disorders and COVID\u201019. 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\u201019, the course of the disease if it occurs and the psychosocial and occupational impact on this population.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Forty\u2010two patients presented symptoms suggestive of infection by COVID\u201019, and in six cases, the disease was confirmed by RT\u2010PCR. The cumulative incidence of our series was 1.73%. It is worth noting the complexity of the management of COVID\u201019 in two patients on prophylaxis with non\u2010factor 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Patients with congenital bleeding disorders infected with SARS\u2010CoV\u20102 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\u201019 had a major impact on the psychosocial aspects of these patients which must be remedied with recovery plans.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14089","type":"journal-article","created":{"date-parts":[[2020,6,11]],"date-time":"2020-06-11T03:44:56Z","timestamp":1591847096000},"page":"773-778","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Registry of patients with congenital bleeding disorders and COVID\u201019 in Madrid"],"prefix":"10.1111","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3296-4288","authenticated-orcid":false,"given":"Mar\u00eda Teresa","family":"\u00c1lvarez Rom\u00e1n","sequence":"first","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4601-7150","authenticated-orcid":false,"given":"Nora","family":"Butta Coll","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8706-0668","authenticated-orcid":false,"given":"Sara","family":"Garc\u00eda Barcenilla","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lourdes","family":"P\u00e9rez Gonz\u00e1lez","sequence":"additional","affiliation":[{"name":"Madrid Haemophilia Association  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ivan","family":"de la Plaza Collazo","sequence":"additional","affiliation":[{"name":"Madrid Haemophilia Association  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hortensia","family":"De la Corte Rodr\u00edguez","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine and Rehabilitation La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jose A.","family":"Romero Garrido","sequence":"additional","affiliation":[{"name":"Department of Pharmacy La Paz University Hospital  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Monica","family":"Mart\u00edn Salces","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mar\u00eda Isabel","family":"Rivas Pollmar","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tamara","family":"Cebanu","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elena","family":"Gonz\u00e1lez\u2010Zorrilla","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Paula","family":"Acu\u00f1a","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7967-6358","authenticated-orcid":false,"given":"Elena","family":"Monz\u00f3n Manzano","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6360-0113","authenticated-orcid":false,"given":"Em\u00e9rito Carlos","family":"Rodr\u00edguez Merch\u00e1n","sequence":"additional","affiliation":[{"name":"Department of Orthopaedic Surgery Unit Aut\u00f3noma University of Madrid  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Roberto","family":"Trelles Mart\u00ednez","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mar\u00eda J.","family":"Blanco Ba\u00f1ares","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mar","family":"Guti\u00e9rrez Alvari\u00f1o","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3937-3499","authenticated-orcid":false,"given":"Victor","family":"Jim\u00e9nez Yuste","sequence":"additional","affiliation":[{"name":"Department of Hematology La Paz University Hospital\u2010IdiPaz  Madrid Spain"},{"name":"Medicine Faculty Aut\u00f3noma University of Madrid  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2020,8,3]]},"reference":[{"key":"e_1_2_9_2_1","unstructured":"Ministerio de Sanidad.Informaci\u00f3n Cient\u00edfica\u2010T\u00e9cnica. Enfermedad por coronavirus.https:\/\/www.mscbs.gob.es\/profesionales\/saludPublica\/ccayes\/alertasActual\/nCov-China\/documentos\/20200417_ITCoronavirus.pdf. Accessed April 17 2020."},{"key":"e_1_2_9_3_1","article-title":"A cohort of patients with COVID\u201019 in a major teaching hospital in Europe","author":"Borobia AM","year":"2020","journal-title":"medRxiv"},{"key":"e_1_2_9_4_1","unstructured":"World Federation of Haemophilia.COVID\u201019 (coronavirus disease 2019) pandemic caused by SARS\u2010CoV\u20102: practical recommendations for people with hemophilia.https:\/\/news.wfh.org\/covid-19-coronavirus-disease-2019-pandemic-caused-by-sars-cov-2-practical-recommendations-for-hemophilia-patients\/. Accessed March 21 2020."},{"key":"e_1_2_9_5_1","unstructured":"Ministerio de Sanidad.Procedimiento de actuaci\u00f3n frente a casos de infecci\u00f3n por el nuevo coronavirus SARS\u2010CoV\u20102 del Ministerio de Sanidad.https:\/\/www.mscbs.gob.es. Accessed April 2020."},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajem.2020.05.024"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(20)31103-X"},{"key":"e_1_2_9_8_1","unstructured":"European Haemophilia Safety Surveillance.https:\/\/www.euhass.org. Accessed on April 2020."},{"key":"e_1_2_9_9_1","first-page":"1","article-title":"Clinical findings in a patient with haemophilia A affected by COVID\u201019","author":"Cui D","year":"2020","journal-title":"Haemophilia"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2020-217424"},{"key":"e_1_2_9_11_1","first-page":"annrheumdis\u2010202","article-title":"What is the true incidence of COVID\u201019 in patients with rheumatic diseases?","volume":"22","author":"Favalli EG","year":"2020","journal-title":"Ann Rheum Dis"},{"key":"e_1_2_9_12_1","unstructured":"Sociedad Espa\u00f1ola de Calidad Asistencial.https:\/\/:www.calidadasistencial.es\/\/. Accessed May 2020."},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13364"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp2003539"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14044"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14001"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.14089","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hae.14089","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.14089","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,3]],"date-time":"2023-09-03T17:16:40Z","timestamp":1693761400000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.14089"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,8,3]]},"references-count":15,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2020,9]]}},"alternative-id":["10.1111\/hae.14089"],"URL":"https:\/\/doi.org\/10.1111\/hae.14089","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"type":"print","value":"1351-8216"},{"type":"electronic","value":"1365-2516"}],"subject":[],"published":{"date-parts":[[2020,8,3]]},"assertion":[{"value":"2020-05-20","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-06-08","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-08-03","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}