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The use of rIX-FP in patients with haemophilia B: a nurse's perspective


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Srivastava A, Santagostino E, Dougall A, et al.; WFH Guidelines for the Management of Hemophilia panellists and co-authors. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia 2020; 26 Suppl 6: 1–158. doi: 10.1111/hae.14046. SrivastavaA SantagostinoE DougallA WFH Guidelines for the Management of Hemophilia panellists and co-authors WFH Guidelines for the Management of Hemophilia, 3rd edition Haemophilia 2020 26 Suppl 6 1 158 10.1111/hae.14046 32744769 Open DOISearch in Google Scholar

World Federation of Hemophilia. Report on the Annual Global Survey 2017. October 2018. Available from: http://www1.wfh.org/publications/files/pdf-1714.pdf (accessed July 2020). World Federation of Hemophilia Report on the Annual Global Survey 2017 October 2018 Available from: http://www1.wfh.org/publications/files/pdf-1714.pdf (accessed July 2020). Search in Google Scholar

Iorio A, Stonebraker JS, Chambost H, et al. Establishing the prevalence and prevalence at birth of hemophilia in males: a meta-analytic approach using national registries. Ann Intern Med 2019; 171(8): 540–546. doi: 10.7326/M19-1208. IorioA StonebrakerJS ChambostH Establishing the prevalence and prevalence at birth of hemophilia in males: a meta-analytic approach using national registries Ann Intern Med 2019 171 8 540 546 10.7326/M19-1208 31499529 Open DOISearch in Google Scholar

Hemophilia Federation of America. Poorly understood: women and bleeding disorders. 9 May 2013. Available from: https://www.hemophiliafed.org/news-stories/2013/05/poorly-understood-women-and-bleeding-disorders/ (accessed August 2020). Hemophilia Federation of America Poorly understood: women and bleeding disorders 9 May 2013 Available from: https://www.hemophiliafed.org/news-stories/2013/05/poorly-understood-women-and-bleeding-disorders/ (accessed August 2020). Search in Google Scholar

Plug I, Mauser-Bunschoten EP, Bröcker-Vriends AHJT, et al. Bleeding in carriers of hemophilia. Blood 2006; 108(1): 52–6. doi: 10.1182/blood-2005-09-3879. PlugI Mauser-BunschotenEP Bröcker-VriendsAHJT Bleeding in carriers of hemophilia Blood 2006 108 1 52 6 10.1182/blood-2005-09-3879 16551972 Open DOISearch in Google Scholar

Bullinger M, von Mackensen S. Quality of life assessment in haemophilia. Haemophilia 2004; 10(suppl 1): 9–16. doi: 10.1111/j.1355-0691.2004.00874.x. BullingerM von MackensenS Quality of life assessment in haemophilia Haemophilia 2004 10 suppl 1 9 16 10.1111/j.1355-0691.2004.00874.x 14987244 Open DOISearch in Google Scholar

Buckner TW, Witkop M, Guelcher C, et al. Impact of hemophilia B on quality of life in affected men, women, and caregivers – Assessment of patient-reported outcomes in the B-HERO-S study. Eur J Haematol 2018; 100(6): 592–602. doi: 10.1111/ejh.13055. BucknerTW WitkopM GuelcherC Impact of hemophilia B on quality of life in affected men, women, and caregivers – Assessment of patient-reported outcomes in the B-HERO-S study Eur J Haematol 2018 100 6 592 602 10.1111/ejh.13055 29505680 Open DOISearch in Google Scholar

Von Drygalski A, Giermasz A, Castaman G, et al. Etranacogene dezaparvovec (AMT-061 phase 2b): normal/near normal FIX activity and bleed cessation in hemophilia B. Blood Adv 2019; 3(21): 3241–3247. doi: 10.1182/bloodadvances.2019000811. Von DrygalskiA GiermaszA CastamanG Etranacogene dezaparvovec (AMT-061 phase 2b): normal/near normal FIX activity and bleed cessation in hemophilia B Blood Adv 2019 3 21 3241 3247 10.1182/bloodadvances.2019000811 685510131698454 Open DOISearch in Google Scholar

Escobar M, Santagostino E, Mancuso ME, et al. Switching patients in the age of long-acting recombinant products? Expert Rev Hematol 2019; 12(sup1): 1–13. doi: 10.1080/17474086.2018.1564032. EscobarM SantagostinoE MancusoME Switching patients in the age of long-acting recombinant products? Expert Rev Hematol 2019 12 sup1 1 13 10.1080/17474086.2018.1564032 31282771 Open DOISearch in Google Scholar

Ar MC, Balkan C, Kavakli K. Extended half-life coagulation factors: a new era in the management of hemophilia patients. Turk J Haematol 2019; 36(3): 141–154. doi: 10.4274/tjh.galenos.2019.2018.0393. ArMC BalkanC KavakliK Extended half-life coagulation factors: a new era in the management of hemophilia patients Turk J Haematol 2019 36 3 141 154 10.4274/tjh.galenos.2019.2018.0393 668278231088040 Open DOISearch in Google Scholar

European Medicines Agency. IDELVION. Summary of product characteristics. 2016; Available from: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/003955/WC500207380.pdf (accessed July 2020). European Medicines Agency IDELVION. Summary of product characteristics 2016 Available from: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/003955/WC500207380.pdf (accessed July 2020). Search in Google Scholar

Oldenburg J. Optimal treatment strategies for hemophilia: achievements and limitations of current prophylactic regimens. Blood 2015; 125(13): 2038–44. doi: 10.1182/blood-2015-01-528414. OldenburgJ Optimal treatment strategies for hemophilia: achievements and limitations of current prophylactic regimens Blood 2015 125 13 2038 44 10.1182/blood-2015-01-528414 25712992 Open DOISearch in Google Scholar

Simpson ML, Valentino LA. Management of joint bleeding in hemophilia. Expert Rev Hematol 2012; 5(4): 459–68. doi: 10.1586/ehm.12.27. SimpsonML ValentinoLA Management of joint bleeding in hemophilia Expert Rev Hematol 2012 5 4 459 68 10.1586/ehm.12.27 22992238 Open DOISearch in Google Scholar

Saraf SK, Singh OP, Singh VP. Peripheral nerve complications in hemophilia. J Assoc Physicians India 2003; 51: 167–9. SarafSK SinghOP SinghVP Peripheral nerve complications in hemophilia J Assoc Physicians India 2003 51 167 9 Search in Google Scholar

Kulkarni R, Presley RJ, Lusher JM, et al. Complications of haemophilia in babies (first two years of life): a report from the Centers for Disease Control and Prevention Universal Data Collection System. Haemophilia 2017; 23(2): 207–214. doi: 10.1111/hae.13081. KulkarniR PresleyRJ LusherJM Complications of haemophilia in babies (first two years of life): a report from the Centers for Disease Control and Prevention Universal Data Collection System Haemophilia 2017 23 2 207 214 10.1111/hae.13081 535494127813214 Open DOISearch in Google Scholar

Swystun LL, James P. Using genetic diagnostics in hemophilia and von Willebrand disease. Hematology Am Soc Hematol Educ Program 2015; 2015: 152–159. doi: 10.1182/asheducation-2015.1.152. SwystunLL JamesP Using genetic diagnostics in hemophilia and von Willebrand disease Hematology Am Soc Hematol Educ Program 2015 2015 152 159 10.1182/asheducation-2015.1.152 26637715 Open DOISearch in Google Scholar

van Vulpen LFD, Holstein K, Martinoli C. Joint disease in haemophilia: Pathophysiology, pain and imaging. Haemophilia 2018; 24 Suppl 6: 44–49. doi: 10.1111/hae.13449. van VulpenLFD HolsteinK MartinoliC Joint disease in haemophilia: Pathophysiology, pain and imaging Haemophilia 2018 24 Suppl 6 44 49 10.1111/hae.13449 29878659 Open DOISearch in Google Scholar

Saulyte Trakymiene S, Steen Carlsson K. On-demand treatment in persons with severe haemophilia. Eur J Haematol Suppl 2014; 76: 39–47. doi: 10.1111/ejh.12373. Saulyte TrakymieneS Steen CarlssonK On-demand treatment in persons with severe haemophilia Eur J Haematol Suppl 2014 76 39 47 10.1111/ejh.12373 24957106 Open DOISearch in Google Scholar

Gringeri A, Ewenstein B, Reininger A. The burden of bleeding in haemophilia: is one bleed too many? Haemophilia 2014; 20(4): 459–63. doi: 10.1111/hae.12375. GringeriA EwensteinB ReiningerA The burden of bleeding in haemophilia: is one bleed too many? Haemophilia 2014 20 4 459 63 10.1111/hae.12375 24472015 Open DOISearch in Google Scholar

Knobe K, Berntorp E. Haemophilia and joint disease: pathophysiology, evaluation, and management. J Comorb 2011; 1: 51–59. doi: 10.15256/joc.2011.1.2. KnobeK BerntorpE Haemophilia and joint disease: pathophysiology, evaluation, and management J Comorb 2011 1 51 59 10.15256/joc.2011.1.2 555642129090136 Open DOISearch in Google Scholar

Blanchette VS, Key NS, Ljung LR, et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost 2014; 12(11): 1935–9. doi: 10.1111/jth.12672. BlanchetteVS KeyNS LjungLR Definitions in hemophilia: communication from the SSC of the ISTH J Thromb Haemost 2014 12 11 1935 9 10.1111/jth.12672 25059285 Open DOISearch in Google Scholar

Donadel-Claeyssens S, European Paediatric Network for Haemophilia Management. Current co-ordinated activities of the PEDNET (European Paediatric Network for Haemophilia Management). Haemophilia 2006; 12(2): 124–7. doi: 10.1111/j.1365-2516.2006.01202.x. Donadel-ClaeyssensS European Paediatric Network for Haemophilia Management Current co-ordinated activities of the PEDNET (European Paediatric Network for Haemophilia Management) Haemophilia 2006 12 2 124 7 10.1111/j.1365-2516.2006.01202.x 16476085 Open DOISearch in Google Scholar

Ota S, Mclimont M, Carcao MD, et al. Definitions for haemophilia prophylaxis and its outcomes: the Canadian consensus study. Haemophilia 2007; 13(1): 12–20. 10.1111/j.1365-2516.2006.01409.x. OtaS MclimontM CarcaoMD Definitions for haemophilia prophylaxis and its outcomes: the Canadian consensus study Haemophilia 2007 13 1 12 20 10.1111/j.1365-2516.2006.01409.x 17212719 Open DOISearch in Google Scholar

Medical and Scientific Advisory Council (MASAC). MASAC Recommendation Concerning Prophylaxis (Regular Administration of Clotting Factor Concentrate to Prevent Bleeding). MASAC Document 241. National Hemophilia Foundation, 2016. Available from: https://www.hemophilia.org/sites/default/files/document/files/241prophylaxis.pdf (Accessed August 2020). Medical and Scientific Advisory Council (MASAC) MASAC Recommendation Concerning Prophylaxis (Regular Administration of Clotting Factor Concentrate to Prevent Bleeding). MASAC Document 241 National Hemophilia Foundation 2016 Available from: https://www.hemophilia.org/sites/default/files/document/files/241prophylaxis.pdf (Accessed August 2020). Search in Google Scholar

Manco-Johnson MJ, Soucie JM, Gill JC; Joint Outcomes Committee of the Universal Data Collection, US Hemophilia Treatment Center Network. Prophylaxis usage, bleeding rates, and joint outcomes of hemophilia, 1999 to 2010: a surveillance project. Blood 2017; 129(17): 2368–2374. doi: 10.1182/blood-2016-02-683169. Manco-JohnsonMJ SoucieJM GillJC Joint Outcomes Committee of the Universal Data Collection, US Hemophilia Treatment Center Network Prophylaxis usage, bleeding rates, and joint outcomes of hemophilia, 1999 to 2010: a surveillance project Blood 2017 129 17 2368 2374 10.1182/blood-2016-02-683169 540944528183693 Open DOISearch in Google Scholar

Skinner MW. WFH: closing the global gap--achieving optimal care. Haemophilia 2012; 18 Suppl 4: 1–12. doi: 10.1111/j.1365-2516.2012.02822.x. SkinnerMW WFH: closing the global gap--achieving optimal care Haemophilia 2012 18 Suppl 4 1 12 10.1111/j.1365-2516.2012.02822.x Open DOISearch in Google Scholar

Castaman G. The benefits of prophylaxis in patients with hemophilia B. Expert Rev Hematol 2018; 11(8): 673–683. doi: 10.1080/17474086.2018.1489719. CastamanG The benefits of prophylaxis in patients with hemophilia B Expert Rev Hematol 2018 11 8 673 683 10.1080/17474086.2018.1489719 Open DOISearch in Google Scholar

Lambert T, Benson G, Dolan G, et al. Practical aspects of extended half-life products for the treatment of haemophilia. Ther Adv Hematol 2018; 9(9): 295–308. doi: 10.1177/2040620718796429 LambertT BensonG DolanG Practical aspects of extended half-life products for the treatment of haemophilia Ther Adv Hematol 2018 9 9 295 308 10.1177/2040620718796429 Open DOISearch in Google Scholar

Burke T, Asghar S, O’Hara J, Sawyer EK, Li N. Clinical, humanistic, and economic burden of severe hemophilia B in the United States: Results from the CHESS US and CHESS US+ population surveys. Orphanet J Rare Dis 2021; 16(1): 143. doi: 10.1186/s13023-021-01774-9. BurkeT AsgharS O’HaraJ SawyerEK LiN Clinical, humanistic, and economic burden of severe hemophilia B in the United States: Results from the CHESS US and CHESS US+ population surveys Orphanet J Rare Dis 2021 16 1 143 10.1186/s13023-021-01774-9 Open DOISearch in Google Scholar

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(6): 535–44. doi: 10.1056/NEJMoa067659. Manco-JohnsonMJ AbshireTC ShapiroAD Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia N Engl J Med 2007 357 6 535 44 10.1056/NEJMoa067659 Open DOISearch in Google Scholar

European Medicines Agency. BeneFIX. Summary of product characteristics. 2019; Available from: https://www.ema.europa.eu/en/documents/product-information/benefix-epar-product-information_en.pdf (accessed August 2020). European Medicines Agency BeneFIX. Summary of product characteristics 2019 Available from: https://www.ema.europa.eu/en/documents/product-information/benefix-epar-product-information_en.pdf (accessed August 2020). Search in Google Scholar

Hacker MR, Geraghty S, Manco-Johnson M. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia 2001; 7(4): 392–6. doi: 10.1046/j.1365-2516.2001.00534.x. HackerMR GeraghtyS Manco-JohnsonM Barriers to compliance with prophylaxis therapy in haemophilia Haemophilia 2001 7 4 392 6 10.1046/j.1365-2516.2001.00534.x Open DOISearch in Google Scholar

Food and Drug Administration (FDA). IDELVION. Highlights of prescribing information. 2019. Available from: https://labeling.cslbehring.com/PI/US/Idelvion/EN/Idelvion-Prescribing-Information.pdf (accessed August 2020). Food and Drug Administration (FDA) IDELVION. Highlights of prescribing information 2019 Available from: https://labeling.cslbehring.com/PI/US/Idelvion/EN/Idelvion-Prescribing-Information.pdf (accessed August 2020). Search in Google Scholar

Chhabra A, Spurden D, Fogarty PF, et al. Real-world outcomes associated with standard half-life and extended half-life factor replacement products for treatment of haemophilia A and B. Blood Coagul Fibrinolysis 2020; 31(3): 186–192. doi: 10.1097/MBC.0000000000000885. ChhabraA SpurdenD FogartyPF Real-world outcomes associated with standard half-life and extended half-life factor replacement products for treatment of haemophilia A and B Blood Coagul Fibrinolysis 2020 31 3 186 192 10.1097/MBC.0000000000000885 Open DOISearch in Google Scholar

Meeks SL, Batsuli G. Hemophilia and inhibitors: current treatment options and potential new therapeutic approaches. Hematology Am Soc Hematol Educ Program 2016; 2016(1): 657–662. doi: 10.1182/asheducation-2016.1.657. MeeksSL BatsuliG Hemophilia and inhibitors: current treatment options and potential new therapeutic approaches Hematology Am Soc Hematol Educ Program 2016 2016 1 657 662 10.1182/asheducation-2016.1.657 Open DOISearch in Google Scholar

Hemophilia & Rare Bleeding Disorders. What is Congenital Hemophilia? Novo Nordrisk, 2016. Available from: https://www.rarebleedingdisorders.com/bleeding-disorders/congenital-hemophilia.html (accessed August 2020). Hemophilia & Rare Bleeding Disorders What is Congenital Hemophilia? Novo Nordrisk 2016 Available from: https://www.rarebleedingdisorders.com/bleeding-disorders/congenital-hemophilia.html (accessed August 2020). Search in Google Scholar

Santagostino E. Transforming the treatment for hemophilia B patients: update on the clinical development of recombinant fusion protein linking recombinant coagulation factor IX with recombinant albumin (rIX-FP). Thromb Res 2016; 141 Suppl 3: S5–8. doi: 10.1016/S0049-3848(16)30415-7. SantagostinoE Transforming the treatment for hemophilia B patients: update on the clinical development of recombinant fusion protein linking recombinant coagulation factor IX with recombinant albumin (rIX-FP) Thromb Res 2016 141 Suppl 3 S5 8 10.1016/S0049-3848(16)30415-7 Open DOISearch in Google Scholar

Santagostino E, Négrier C, Klamroth R, et al. Safety and pharmacokinetics of a novel recombinant fusion protein linking coagulation factor IX with albumin (rIX-FP) in hemophilia B patients. Blood 2012; 120(12): 2405–11. doi: 10.1182/blood-2012-05-429688. SantagostinoE NégrierC KlamrothR Safety and pharmacokinetics of a novel recombinant fusion protein linking coagulation factor IX with albumin (rIX-FP) in hemophilia B patients Blood 2012 120 12 2405 11 10.1182/blood-2012-05-429688 344825522859609 Open DOISearch in Google Scholar

Martinowitz U, Lissitchkov T, Lubetsky A, et al. Results of a phase I/II open-label, safety and efficacy trial of coagulation factor IX (recombinant), albumin fusion protein in haemophilia B patients. Haemophilia 2015; 21(6): 784–90. doi: 10.1111/hae.12721. MartinowitzU LissitchkovT LubetskyA Results of a phase I/II open-label, safety and efficacy trial of coagulation factor IX (recombinant), albumin fusion protein in haemophilia B patients Haemophilia 2015 21 6 784 90 10.1111/hae.12721 468246025990590 Open DOISearch in Google Scholar

Santagostino E, Martinowitz U, Lissitchkov T, et al. Long-acting recombinant coagulation factor IX albumin fusion protein (rIX-FP) in hemophilia B: results of a phase 3 trial. Blood 2016; 127(14): 1761–9. doi: 10.1182/blood-2015-09-669234. SantagostinoE MartinowitzU LissitchkovT Long-acting recombinant coagulation factor IX albumin fusion protein (rIX-FP) in hemophilia B: results of a phase 3 trial Blood 2016 127 14 1761 9 10.1182/blood-2015-09-669234 482541326755710 Open DOISearch in Google Scholar

Kenet G, Chambost H, Male C, et al. Long-acting recombinant fusion protein linking coagulation factor IX with albumin (rIXFP) in children. Results of a phase 3 trial. Thromb Haemost 2016; 116(4): 659–68. doi: 10.1160/TH16-03-0179. KenetG ChambostH MaleC Long-acting recombinant fusion protein linking coagulation factor IX with albumin (rIXFP) in children. Results of a phase 3 trial Thromb Haemost 2016 116 4 659 68 10.1160/TH16-03-0179 503931627583313 Open DOISearch in Google Scholar

Mancuso ME, Lubetsky A, Pan-Petesch B, et al. Long-term safety and efficacy of rIX-FP prophylaxis with extended dosing intervals up to 21 days in adults/adolescents with hemophilia B. J Thromb Haemost 2020; 18(5): 1065–1074. doi: 10.1111/jth.14778. MancusoME LubetskyA Pan-PeteschB Long-term safety and efficacy of rIX-FP prophylaxis with extended dosing intervals up to 21 days in adults/adolescents with hemophilia B J Thromb Haemost 2020 18 5 1065 1074 10.1111/jth.14778 731821332078256 Open DOISearch in Google Scholar

Kenet G, Chambost H, Male C, et al. Long-term safety and efficacy of recombinant coagulation factor IX albumin fusion protein (rIX-FP) in previously treated pediatric patients with hemophilia B: results from a phase 3b extension study. Thromb Haemost 2020; 120(4): 599–606. doi: 10.1055/s-0040-1705116. KenetG ChambostH MaleC Long-term safety and efficacy of recombinant coagulation factor IX albumin fusion protein (rIX-FP) in previously treated pediatric patients with hemophilia B: results from a phase 3b extension study Thromb Haemost 2020 120 4 599 606 10.1055/s-0040-1705116 32185782 Open DOISearch in Google Scholar

Gill JC, Roberts J, Li Y, Castaman G. Sustained high trough factor IX activity levels with continued use of rIX-FP in adult and paediatric patients with haemophilia B. Haemophilia 2019; 25(3): e219–e222. doi: 10.1111/hae.13735. GillJC RobertsJ LiY CastamanG Sustained high trough factor IX activity levels with continued use of rIX-FP in adult and paediatric patients with haemophilia B Haemophilia 2019 25 3 e219 e222 10.1111/hae.13735 706519830866086 Open DOISearch in Google Scholar

Négrier C, Abdul Karim F, Lepatan LM, et al. Efficacy and safety of long-acting recombinant fusion protein linking factor IX with albumin in haemophilia B patients undergoing surgery. Haemophilia 2016; 22(4): e259–66. doi: 10.1111/hae.12972. NégrierC Abdul KarimF LepatanLM Efficacy and safety of long-acting recombinant fusion protein linking factor IX with albumin in haemophilia B patients undergoing surgery Haemophilia 2016 22 4 e259 66 10.1111/hae.12972 27333467 Open DOISearch in Google Scholar

von Mackensen S, Shah J, Seifert W, Kenet G. Health-related quality of life in paediatric haemophilia B patients treated with rIX-FP. Haemophilia 2019; 25(1): 45–53. doi: 10.1111/hae.13624. von MackensenS ShahJ SeifertW KenetG Health-related quality of life in paediatric haemophilia B patients treated with rIX-FP Haemophilia 2019 25 1 45 53 10.1111/hae.13624 691642730427091 Open DOISearch in Google Scholar

Oldenburg J, Yan S, Maro G, Krishnarajah G, Tiede A. Assessing bleeding rates, related clinical impact and factor utilization in German hemophilia B patients treated with extended half-life rIX-FP compared to prior drug therapy. Curr Med Res Opin 2019; 36(1): 9–15. doi: 10.1080/03007995.2019.1662675. OldenburgJ YanS MaroG KrishnarajahG TiedeA Assessing bleeding rates, related clinical impact and factor utilization in German hemophilia B patients treated with extended half-life rIX-FP compared to prior drug therapy Curr Med Res Opin 2019 36 1 9 15 10.1080/03007995.2019.1662675 31469321 Open DOISearch in Google Scholar

Marino R, Maro G, Sommerer P, Malcangi G. PB0691. Real-world utilization and bleed rates in patients with hemophilia B who switched to recombinant factor IX fusion protein (rIX-FP) in Italy, Belgium and the United Kingdom. Res Pract Thromb Haemost 2019; 3(S1): 323. doi: 10.1002/rth2.12229. MarinoR MaroG SommererP MalcangiG PB0691. Real-world utilization and bleed rates in patients with hemophilia B who switched to recombinant factor IX fusion protein (rIX-FP) in Italy, Belgium and the United Kingdom Res Pract Thromb Haemost 2019 3 S1 323 10.1002/rth2.12229 Open DOISearch in Google Scholar

Gue D, Squire S, McIntosh K, et al. Joining the patient on the path to customized prophylaxis: one hemophilia team explores the tools of engagement. J Multidiscip Healthc 2015; 8: 527–34. doi: 10.2147/JMDH.S93579. GueD SquireS McIntoshK Joining the patient on the path to customized prophylaxis: one hemophilia team explores the tools of engagement J Multidiscip Healthc 2015 8 527 34 10.2147/JMDH.S93579 467661626675989 Open DOISearch in Google Scholar

Kulkarni R. Use of telehealth in the delivery of comprehensive care for patients with haemophilia and other inherited bleeding disorders. Haemophilia 2018; 24(1): 33–42. doi: 10.1111/hae.13364. KulkarniR Use of telehealth in the delivery of comprehensive care for patients with haemophilia and other inherited bleeding disorders Haemophilia 2018 24 1 33 42 10.1111/hae.13364 29205699 Open DOISearch in Google Scholar

O'Donovan M, Buckley C, Benson J, et al. Telehealth for delivery of haemophilia comprehensive care during the COVID-19 pandemic. Haemophilia 2020; 26(6): 984–990. doi: 10.1111/hae.14156. O'DonovanM BuckleyC BensonJ Telehealth for delivery of haemophilia comprehensive care during the COVID-19 pandemic Haemophilia 2020 26 6 984 990 10.1111/hae.14156 753751632997849 Open DOISearch in Google Scholar

Pai M, Key NS, Skinner M, et al. NHF-McMaster Guideline on Care Models for Haemophilia Management. Haemophilia 2016; 22(S3): 6–16. doi: 10.1111/hae.13008. PaiM KeyNS SkinnerM NHF-McMaster Guideline on Care Models for Haemophilia Management Haemophilia 2016 22 S3 6 16 10.1111/hae.13008 27348396 Open DOISearch in Google Scholar

National Hemophilia Foundation. Nurses' Guide to Bleeding Disorders. 2020; Available from: https://www.hemophilia.org/Researchers-Healthcare-Providers/NHF-Provider-Working-Groups/Nursing-Working-Group/Resources-for-Nurses/Nurses-Guide-to-Bleeding-Disorders (accessed August 2020). National Hemophilia Foundation Nurses' Guide to Bleeding Disorders 2020 Available from: https://www.hemophilia.org/Researchers-Healthcare-Providers/NHF-Provider-Working-Groups/Nursing-Working-Group/Resources-for-Nurses/Nurses-Guide-to-Bleeding-Disorders (accessed August 2020). Search in Google Scholar

Saxena K. Barriers and perceived limitations to early treatment of hemophilia. J Blood Med 2013: 4: 49–56. doi: 10.2147/JBM.S43734. SaxenaK Barriers and perceived limitations to early treatment of hemophilia J Blood Med 2013 4 49 56 10.2147/JBM.S43734 366013323700376 Open DOISearch in Google Scholar

von Mackensen S, Kalnins W, Krucker J, et al. Haemophilia patients’ unmet needs and their expectations of the new extended half-life factor concentrates. Haemophilia 2017; 23(4): 566–574. doi: 10.1111/hae.13221. von MackensenS KalninsW KruckerJ Haemophilia patients’ unmet needs and their expectations of the new extended half-life factor concentrates Haemophilia 2017 23 4 566 574 10.1111/hae.13221 28370896 Open DOISearch in Google Scholar

Thornburg CD, Duncan NA. Treatment adherence in hemophilia. Patient Prefer Adherence 2017; 11: 1677–1686. doi: 10.2147/PPA.S139851. ThornburgCD DuncanNA Treatment adherence in hemophilia Patient Prefer Adherence 2017 11 1677 1686 10.2147/PPA.S139851 563006829033555 Open DOISearch in Google Scholar

Wiley RE, Khoury CP, Snihur AWK, et al. From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies. Haemophilia 2019; 25(3): 433–440. doi: 10.1111/hae.13754. WileyRE KhouryCP SnihurAWK From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies Haemophilia 2019 25 3 433 440 10.1111/hae.13754 685075331016823 Open DOISearch in Google Scholar

Korth-Bradley JM, Rendo P, Smith L, Altisent C. Pharmacokinetics, efficacy, and safety of nonacog alfa in previously treated patients with moderately severe to severe hemophilia B. Clin Ther 2016; 38(4): 936–44. doi: 10.1016/j.clinthera.2016.02.015. Korth-BradleyJM RendoP SmithL AltisentC Pharmacokinetics, efficacy, and safety of nonacog alfa in previously treated patients with moderately severe to severe hemophilia B Clin Ther 2016 38 4 936 44 10.1016/j.clinthera.2016.02.015 26969334 Open DOISearch in Google Scholar

Valentino LA, Rusen L, Elezovic I, Smith LM, Korth-Bradley JM, Rendo P. Multicentre, randomized, open-label study of on-demand treatment with two prophylaxis regimens of recombinant coagulation factor IX in haemophilia B subjects. Haemophilia 2014; 20(3): 398–406. doi: 10.1111/hae.12344. ValentinoLA RusenL ElezovicI SmithLM Korth-BradleyJM RendoP Multicentre, randomized, open-label study of on-demand treatment with two prophylaxis regimens of recombinant coagulation factor IX in haemophilia B subjects Haemophilia 2014 20 3 398 406 10.1111/hae.12344 24418368 Open DOISearch in Google Scholar

Kavakli K, Smith L, Kuliczkowski K, et al. Once-weekly prophylactic treatment vs. on-demand treatment with nonacog alfa in patients with moderately severe to severe haemophilia B. Haemophilia 2016; 22(3): 381–8. doi: 10.1111/hae.12878. KavakliK SmithL KuliczkowskiK Once-weekly prophylactic treatment vs. on-demand treatment with nonacog alfa in patients with moderately severe to severe haemophilia B Haemophilia 2016 22 3 381 8 10.1111/hae.12878 26823276 Open DOISearch in Google Scholar

Monahan PE, Liesner R, Sullivan ST, Ramirez ME, Kelly P, Roth DA. Safety and efficacy of investigator-prescribed BeneFIX prophylaxis in children less than 6 years of age with severe haemophilia B. Haemophilia 2010; 16(3): 460–8. doi: 10.1111/j.1365-2516.2009.02162.x. MonahanPE LiesnerR SullivanST RamirezME KellyP RothDA Safety and efficacy of investigator-prescribed BeneFIX prophylaxis in children less than 6 years of age with severe haemophilia B Haemophilia 2010 16 3 460 8 10.1111/j.1365-2516.2009.02162.x 20059559 Open DOISearch in Google Scholar

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