{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T07:43:20Z","timestamp":1790063000445,"version":"4.0.1"},"reference-count":31,"publisher":"Wiley","issue":"s1","license":[{"start":{"date-parts":[[2011,6,22]],"date-time":"2011-06-22T00:00:00Z","timestamp":1308700800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2011,7]]},"abstract":"<jats:p><jats:bold>Summary.\u2002<\/jats:bold> Inherited bleeding disorders are especially problematic for affected girls and women due to the monthly occurrence of menstrual periods and the effects on reproductive health. Although heavy menstrual bleeding (HMB) is the most common manifestation, females with inherited bleeding disorders (FBD) experience other bleeding symptoms throughout the lifespan that can lead to increased morbidity and impairment of daily activities. The purpose of this article is to describe the utility of a female\u2010focused surveillance effort [female Universal Data Collection (UDC) project] in the United States Haemophilia Treatment Centres (HTCs) and to describe the baseline frequency and spectrum of diagnoses and outcomes. All FBD aged 2\u2003years and older receiving care at selected HTCs were eligible for enrolment. Demographic data, diagnoses and historical data regarding bleeding symptoms, treatments, gynaecological abnormalities and obstetrical outcomes were analysed. Analyses represent data collected from 2009 to 2010. The most frequent diagnoses were type 1 von Willebrand\u2019s disease (VWD) (195\/319; 61.1%), VWD type unknown (49\/319; 15.4%) and factor VIII deficiency (40\/319; 12.5%). HMB was the most common bleeding symptom (198\/253; 78.3%); however, 157 (49.2%) participants reported greater than four symptoms. Oral contraceptives were used most frequently to treat HMB (90\/165; 54.5%), followed by desmopressin [1\u20108 deamino\u2010D\u2010arginine vasopressin (DDAVP)] (56\/165; 33.9%). Various pregnancy and childbirth complications were reported, including bleeding during miscarriage (33\/43; 76.7%) and postpartum haemorrhage (PPH) (41\/109; 37.6%). FBD experience multiple bleeding symptoms and obstetrical\u2010gynaecological morbidity. The female UDC is the first prospective, longitudinal surveillance in the US focusing on FBD and has the potential to further identify complications and reduce adverse outcomes in this population.<\/jats:p>","DOI":"10.1111\/j.1365-2516.2011.02558.x","type":"journal-article","created":{"date-parts":[[2011,6,22]],"date-time":"2011-06-22T00:41:50Z","timestamp":1308703310000},"page":"6-13","source":"Crossref","is-referenced-by-count":76,"title":["Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres"],"prefix":"10.1111","volume":"17","author":[{"given":"V. R.","family":"BYAMS","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"P. A.","family":"KOUIDES","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"R.","family":"KULKARNI","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. 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Available athttp:\/\/www.fda.gov\/NewsEvents\/Newsroom\/PressAnnouncements\/ucm184747.htm. Accessed March 29 2010."},{"key":"e_1_2_8_25_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.contraception.2010.07.010"},{"key":"e_1_2_8_26_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.2003.00756.x"},{"key":"e_1_2_8_27_2","unstructured":"JaisamramU.A multicenter open\u2010label randomized comparative study of the treatment for anovulatory dysfunctional uterine bleeding by tranexamic acid compared with norethisterone in Thailand. Oral presentation scientific meeting of the Royal Thai College of Obstetricians and Gynaecologists Bangkok Thailand 2010."},{"key":"e_1_2_8_28_2","volume-title":"Recommendations for the Prevention of Postpartum Hemorrhage","author":"World Health Organization (WHO)","year":"2007"},{"key":"e_1_2_8_29_2","article-title":"A multidisciplinary clinic for women with inherited bleeding disorders","author":"Lee CA","year":"2007","journal-title":"J Thromb Haemost"},{"key":"e_1_2_8_30_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2004.01001.x"},{"key":"e_1_2_8_31_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1351-8216.2003.00832.x"},{"key":"e_1_2_8_32_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1538-7836.2006.01847.x"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1365-2516.2011.02558.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1365-2516.2011.02558.x","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,12]],"date-time":"2023-09-12T03:05:45Z","timestamp":1694487945000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1365-2516.2011.02558.x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2011,6,22]]},"references-count":31,"journal-issue":{"issue":"s1","published-print":{"date-parts":[[2011,7]]}},"alternative-id":["10.1111\/j.1365-2516.2011.02558.x"],"URL":"https:\/\/doi.org\/10.1111\/j.1365-2516.2011.02558.x","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2011,6,22]]}}}