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WFH in Melbourne: the long march of the haemophilia nurse continues

Abstract

The World Federation of Hemophilia’s world congress in Melbourne offered haemophilia nurses from across the world an opportunity to meet and share knowledge and experience in a friendly and supportive setting.

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The impending medical revolution in haemophilia care: one patient’s view

among UK patients with bleeding disorders, known to have received potentially contaminated plasma products. Haemophilia. 2011; 17R6S: 931Q7. doi: 10.1111/j.1365Q2516.2011.02508.x. 7. Miguelino MG, Powell JS. Clinical utility and patient perspectives on the use of extended halfQlife rFIXFc in the management of hemophilia B. Patient Prefer Adherence 2014; 8: 1073Q83. doi: 10.2147/PPA.S54951. 8. United States of America Food and Drug Administration. FDA approves first longQ acting recombinant coagulation Factor IX concentrate for

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Health-related quality of life of partners of adults with haemophilia

therapy. Semin Hematol 2003; 40: 3-9. 4. Manco-Johnson M. Comparing prophylaxis with episodic treatment in haemophilia A: implications for clinical practice. Haemophilia 2007; 13 Suppl 2: 4-9. 5. Ljung R. Prophylactic therapy in haemophilia. Blood Rev 2009; 23(6): 267-74. doi: 10.1016/j.blre.2009.08.001. 6. Gringeri A, Lundin B, von Mackensen S, et al. A randomized clinical trial of prophylaxis in children with hemophilia A (the ESPRIT Study). J Thromb Haemost 2011; 9(4): 700-10. doi: 10.1111/j.1538-7836.2011.04214.x

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Physical function and quality of life in adolescents with haemophilia (SO-FIT study)

References 1. Manco-Johnson MJ, Abshire TC, Shapiro AD, et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med 2007; 357: 535-44. 2. Liesner RJ, Khair K, Hann IM. The impact of prophyactic treatment on children with severe haemophilia. Br J Haematol 1996; 92: 973-8. 3. Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al. Guidelines for the management of hemophilia. Haemophilia 2013; 19(1): e1-47. 4. Richards M, Williams M, Chalmers E

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Young people’s experience of transition from paediatric to adult haemophilia care in the UK

References 1. Chaplin S. Transition from paediatric to adult services in haemophilia. J Haem Pract 2016;3(1). doi: 10.17225/jhp00059. 2. National Institute for Health and Care Excellence. Transition from children’s to adults’ services for young people using health or social care services. NICE guideline NG43. February 2016. Available at https://www.nice.org.uk/guidance/ng43 (accessed 1 October 2018). 3. Dodgson S, Holland M, Pembroke L, Khair K. Transforming Transition: enhancing practice in haemophilia. J Haem

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Boys and parents’ perceptions of living with haemophilia and an inhibitor

References 1 Weatherhall J, Barnes N, Brown C, Preaud, E. Future characteristics of bypassing agents to improve care of hemophilia inhibitor patients: an economic and healthrelated quality of life perspective. Pharmacoeconomics Outcomes Res 2011; 11: 411-414. 2 Hay CRM, Brown S, Collins PW, et al. The diagnosis and management of factor Vlll and lX inhibitors: a guideline from the United Kingdom Haemophilia Centre Doctors Organisation. Br J Haematol 2006; 133: 591-605. 3 Brown TM, Lee WC, Joshi AV, Pashos CL

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Celebrating 50 years of haemophilia care at the Royal Free Hospital

References 1. Le Quesne B, Britten MI, Maragaki C, Dormandy KM. Home treatment for patients with haemophilia. Lancet 1974; 2(7879): 507-9. 2. Britten MI, Spooner RJD, Dormandy KM, Biggs R. The haemophiliac boy in school. Br Med J 1966; 2(5507): 224.

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Literature Review: Transition From Paediatric to Adult Services in Haemophilia

References 1. Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al; Treatment Guidelines Working Group on Behalf of The World Federation Of Hemo­philia. Guidelines for the management of hemophilia. Haemophilia 2013 Jan;19(1):e1-47. doi: 10.1111/j.1365-2516.2012.02909.x. 2. Department for Education and Skills, Department of Health. Transition. Getting it right for young people. March 2006. (http://webarchive.nation­alarchives.gov.uk/20130107105354/http

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Musculoskeletal care in haemophilia: the importance of the joint team approach

References 1. Goddard NJ, Mann HA, Lee CA. Total knee replacement in patients with endstage haemophilic arthropathy - 25 year results. J Bone and Joint Surg Br 2010;92(8):1085-9. doi: 10.1302/0301-620X.92B8.23922. 2. Wong JM, Mann HA, Goddard NJ. Perioperative clotting factor replacement in infected total knee arthroplasty. Haemophilia 2012;18(4):607-12. doi: 10.1111/j.1365-2516.2011.02728.x.

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Does sickle cell trait reduce the frequency of spontaneous bleeds in severe haemophilia?

References 1. Tantawy AAG. Molecular genetics of hemophilia-A: clinical perspectives. Egypt J Med Hum Genet 2010;11:105-14. doi: 10.1016/j. ejmhg.2010.10.005. 2. Kujovich JL. Factor V Leiden thrombophilia. Genet Med 2011;13:1-6. doi: 10.1097/GIM.0b013e3181faa0f2. 3. Franchini M, Lippi G. Factor V Leiden and hemophilia. Thromb Res 2010;125:119-23. doi: 10.1016/j.thromres.2009.11.003. 4. Flint J, Harding RM, Boyce AJ, Clegg JB. The population genetics of the haemoglobinopathies. Bailliere’s Clin

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