{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T16:02:59Z","timestamp":1777478579368,"version":"3.51.4"},"reference-count":22,"publisher":"SAGE Publications","issue":"8","license":[{"start":{"date-parts":[[2018,6,12]],"date-time":"2018-06-12T00:00:00Z","timestamp":1528761600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Clin Appl Thromb Hemost"],"published-print":{"date-parts":[[2018,11]]},"abstract":"<jats:p>Patient registry is a powerful tool for planning health care and setting groundwork for research. This survey reports a detailed registry of inherited bleeding disorders (IBD) and their management at a not-for-profit organization in a developing country to form the basis for planning development and research. We reviewed medical records of patients with IBD from 8 hemophilia treatment centers of Fatimid Foundation located in various cities. Information collected included sociodemographic data, diagnostic tests, severity of hemophilia A and B, number of bleeding episodes per year, site and frequency of hemarthrosis, and seropositivity for viral diseases. We analyzed 1497 patients from November 1, 2015, to April 30, 2016. There were 1296 (87%) males and 201 (13%) females with a mean age of 24.5 (11) years (range, 6 months to 65 years). Hemophilia A constituted the bulk of IBD (848, 57%) followed by von Willebrand disease (172, 11%), hemophilia B (144, 10%), platelet function defect (106, 7%), and rare bleeding disorders (70, 5%). Mucocutaneous bleeding (1144, 76%) and hemarthrosis (1035 patients, 69%) were the main complications. There were 1026 (69%) patients who received only blood components for treatment of any bleeding episode while the remaining 464 (31%) were on combination therapy (blood components and factor concentrate). Seroreactivity for hepatitis C was frequent (28%), while hepatitis B (1%) and human immunodeficiency virus (0.01%) were less commonly seen. This study was an important step toward a patient registry in a hemophilia treatment center in Pakistan. Hemophilia A is the most common bleeding disorder and hepatitis C is the most frequent treatment-related complication.<\/jats:p>","DOI":"10.1177\/1076029618781033","type":"journal-article","created":{"date-parts":[[2018,6,12]],"date-time":"2018-06-12T22:23:41Z","timestamp":1528842221000},"page":"1241-1248","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":6,"title":["Inherited Bleeding Disorders\u2014Experience of a Not-for-Profit Organization in Pakistan"],"prefix":"10.1177","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8537-7322","authenticated-orcid":false,"given":"Shabneez","family":"Hussain","sequence":"first","affiliation":[{"name":"Fatimid Foundation, Karachi, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shahida","family":"Baloch","sequence":"additional","affiliation":[{"name":"Fatimid Foundation, Karachi, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Azra","family":"Parvin","sequence":"additional","affiliation":[{"name":"Fatimid Foundation, Karachi, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Akbar","family":"Najmuddin","sequence":"additional","affiliation":[{"name":"Hemophilia Department, Fatimid Foundation, Karachi, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Farhana","family":"Musheer","sequence":"additional","affiliation":[{"name":"Fatimid Foundation, Lahore, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mubashra","family":"Junaid","sequence":"additional","affiliation":[{"name":"Fatimid Foundation, Rashidabad, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rab Nawaz","family":"Memon","sequence":"additional","affiliation":[{"name":"Fatimid Foundation, Hyderabad, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fareeda","family":"Bhanbhro","sequence":"additional","affiliation":[{"name":"Fatimid Foundation, Khairpur, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hayat","family":"Ullah","sequence":"additional","affiliation":[{"name":"Fatimid Foundation, Quetta, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0777-3690","authenticated-orcid":false,"given":"Bushra","family":"Moiz","sequence":"additional","affiliation":[{"name":"Section of Hematology and Transfusion Medicine, Department of Pathology and Microbiology, The Aga Khan University Hospital, Karachi, Pakistan"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2018,6,12]]},"reference":[{"key":"bibr1-1076029618781033","unstructured":"Evatt BL. World Federation of Haemophilia Guide to Developing a National Patient Registry; 2005. Published by the World Federation of Hemophilia. Montr\u00e9al, Qu\u00e9bec. Canada."},{"issue":"2","key":"bibr2-1076029618781033","first-page":"1","volume":"4","author":"Haemophilia care in developing countries","year":"1998","journal-title":"Haemophilia"},{"key":"bibr3-1076029618781033","unstructured":"Ardakani MA. Pakistan World Health Organization: World Health Organization; 2016 [cited 29 May 2018]. Available from: http:\/\/www.who.int\/countries\/pak\/en\/"},{"key":"bibr4-1076029618781033","unstructured":"World Federation of Hemophilia report on the annual global survey 2016. Published by the World Federation of Hemophilia. Montr\u00e9al, Qu\u00e9bec. Canada."},{"key":"bibr5-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1177\/1076029610391650"},{"key":"bibr6-1076029618781033","doi-asserted-by":"publisher","DOI":"10.4103\/0377-4929.59183"},{"key":"bibr7-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1111\/ijlh.12785"},{"issue":"2","key":"bibr8-1076029618781033","first-page":"233","volume":"11","author":"Mansouritorghabeh H","year":"2013","journal-title":"Blood Transfus"},{"key":"bibr9-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2008.01907.x"},{"key":"bibr10-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1177\/107602960501100311"},{"key":"bibr11-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2012.02915.x"},{"issue":"3","key":"bibr12-1076029618781033","first-page":"s576","volume":"12","author":"Hassan HJ","year":"2014","journal-title":"Blood Transfus"},{"key":"bibr13-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1055\/s-0031-1281048"},{"key":"bibr14-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2012.02914.x"},{"key":"bibr15-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1055\/s-2005-922228"},{"key":"bibr16-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.2002.00699.x"},{"key":"bibr17-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2012.02862.x"},{"key":"bibr18-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1159\/000040966"},{"issue":"4","key":"bibr19-1076029618781033","doi-asserted-by":"crossref","first-page":"632","DOI":"10.1111\/j.1365-2516.2010.02211.x","volume":"16","author":"Wang XF","year":"2010","journal-title":"Haemophilia"},{"key":"bibr20-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1159\/000041044"},{"key":"bibr21-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.2003.00780.x"},{"key":"bibr22-1076029618781033","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12057"}],"container-title":["Clinical and Applied Thrombosis\/Hemostasis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1076029618781033","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1076029618781033","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1076029618781033","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T14:03:18Z","timestamp":1777384998000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1076029618781033"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,6,12]]},"references-count":22,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2018,11]]}},"alternative-id":["10.1177\/1076029618781033"],"URL":"https:\/\/doi.org\/10.1177\/1076029618781033","relation":{},"ISSN":["1076-0296","1938-2723"],"issn-type":[{"value":"1076-0296","type":"print"},{"value":"1938-2723","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,6,12]]}}}