References
- 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
- O’Hara J, Walsh S, Camp C, et al. The impact of severe haemophilia and the presence of target joints on health-related quality-of-life. Health Qual Life Outcomes. 2018;16(1):84. doi:10.1186/s12955-018-0908-9
- Pipe SW. New therapies for hemophilia. Hematology Am Soc Hematol Educ Program. 2016;2016(1):650–656. doi:10.1182/asheducation-2016.1.650
- Nacca CR, Harris AP, Tuttle JR. Hemophilic arthropathy. Orthopedics. 2017;40(6):e940–e946. doi:10.3928/01477447-20170619-05
- McLintock C. Women with bleeding disorders: clinical and psychological issues. Haemophilia. 2018;24(Suppl 6):22–28. doi:10.1111/hae.13501
- National Hemophilia Foundation. Comprehensive hemophilia management: a payer’s guide to the hemophilia comprehensive care model. Available from: https://www.managedcarehemo.com/wp-content/uploads/2017/09/Payeru2019s-Guide-to-the-Hemophilia-Comprehensive-Care-Model.pdf. Accessed February 9, 2021.
- Aledort LM. The evolution of comprehensive haemophilia care in the United States: perspectives from the frontline. Haemophilia. 2016;22(5):676–683. doi:10.1111/hae.12970
- Centers for Disease Control and Prevention. Community counts: HTC population profile. Available from: https://www.cdc.gov/ncbddd/hemophilia/communitycounts/data-reports/2021-03/table-1-patient-characteristics-by-calendar.html. Accessed July 28, 2021.
- Baker JR, Riske B, Drake JH, et al. US Hemophilia Treatment Center population trends 1990–2010: patient diagnoses, demographics, health services utilization. Haemophilia. 2013;19(1):21–26. doi:10.1111/j.1365-2516.2012.02915.x
- Dalton DR. Hemophilia in the managed care setting. Am J Manag Care. 2015;21(6 Suppl):S123–S130.
- Comprehensive Care Sustainability Collaborative. HTC success in a value-based health care environment: findings from the Comprehensive Care Sustainability Collaborative (CCSC). Available from: https://www.ccschemo.com/webcast20/. Accessed September 17, 2021.
- Croteau SE, Cheng D, Cohen AJ, et al. Regional variation and cost implications of prescribed extended half-life factor concentrates among U.S. haemophilia treatment centres for patients with moderate and severe haemophilia. Haemophilia. 2019;25(4):668–675.
- Goodman C, Rangarao S, Rubin RJ; The Lewin Group. National hemophilia foundation: strategic summit report. Available from: https://www.hemophilia.org/sites/default/files/document/files/HemophiliaSummitFinalReportOct2012.pdf. Accessed February 4, 2021.
- Di Minno G, Tremoli E. Tailoring of medical treatment: hemostasis and thrombosis towards precision medicine. Haematologica. 2017;102(3):411–418. doi:10.3324/haematol.2016.156000
- Mazepa MA, Monahan PE, Baker JR, et al. Men with severe hemophilia in the United States: birth cohort analysis of a large national database. Blood. 2016;127(24):3073–3081. doi:10.1182/blood-2015-10-675140
- White GC. Hemophilia: an amazing 35-year journey from the depths of HIV to the threshold of cure. Trans Am Clin Climatol Assoc. 2010;121:61–73.
- Mejia-Carvajal C, Czapek EE, Valentino LA. Life expectancy in hemophilia outcome. J Thromb Haemost. 2006;4(3):507–509. doi:10.1111/j.1538-7836.2006.01776.x
- National Hemophilia Foundation. History from 2AD to the present. Available from: https://www.hemophilia.org/bleeding-disorders-a-z/overview/history. Accessed July 29, 2021.
- Pai M, Key NS, Skinner M, et al. NHF-McMaster guideline on care models for haemophilia management. Haemophilia. 2016;22(Suppl):36.
- Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia. 2020;26(Suppl 6):1–158. doi:10.1111/hae.14046
- Reding MT, Kenney J. Hemophilia care coordination and current treatment options: the latest insights for managed care and specialty pharmacy. Available from: https://www.managedcarehemo.com/cmece/. Accessed February 4, 2021.
- National Hemophilia Foundation. Comprehensive medical care: HTCs. Available from: https://www.hemophilia.org/healthcare-professionals/guidelines-on-care/comprehensive-medical-care. Accessed October 24, 2020.
- Mitchell P, Wynia M, Golden R, et al. Core principles & values of effective team-based health care. Presented at: National Academy of Medicine (Discussion Paper); October 2, 2012; Washington, DC.
- Weill Cornell Medicine. Comprehensive hemophilia treatment center: research. Available from: https://hemophilia.weill.cornell.edu/research. Accessed April 17, 2021.
- Center for Disease Control. Hemphilia treatment centers. Available from: https://www.cdc.gov/ncbddd/hemophilia/documents/a-simmons_htc-brochure-508c.pdf. Accessed July 30, 2021.
- Medical and Scientific Advisory Council. MASAC documents. Available from: https://www.hemophilia.org/healthcare-professionals/guidelines-on-care/masac-documents. Accessed July 30, 2021.
- University of Vermont Larner Colllege of Medicine. The vermont regional hemophilia treatment center: coagulation lab. Available from: https://www.med.uvm.edu/medicine/hemonc/patient_care_-vermont_regional_hemophilia_treatment_center. Accessed April 17, 2021.
- National Hemophilia Foundation. MASAC Document 262 - MASAC resolution on off-site hemostasis testing. Available from: https://www.hemophilia.org/healthcare-professionals/guidelines-on-care/masac-documents/masac-document-262-masac-resolution-on-off-site-hemostasis-testing. Accessed May 5, 2021.
- Skinner MW, Soucie JM, McLaughlin K. The National Haemophilia Program standards, evaluation and oversight systems in the United States of America. Blood Transfus. 2014;12(Suppl 3):e542–e548.
- Malouin RA, McKernan L, Forsberg A, et al. Impact of the 340B pharmacy program on services and supports for persons served by hemophilia treatment centers in the United States. Matern Child Health J. 2018;22(9):1240–1246. doi:10.1007/s10995-018-2545-7
- New York Blood Center. About New York Blood Center pharmacy: pharmacy services. Available from: https://www.nybloodcenter.org/products-and-services/medical-services/hemophilia-services/pharmacy-services/. Accessed April 17, 2021.
- National Hemophilia Foundation. MASAC Document 188 - recommendations regarding standards of service for pharmacy providers of clotting factor concentrates for home use to patients with bleeding disorders. Available from: https://www.hemophilia.org/healthcare-professionals/guidelines-on-care/masac-documents/masac-document-188-recommendations-regarding-standards-of-service-for-pharmacy-providers-of-clotting-factor-concentrates-for-home-use-to-patients-with-bleeding-disorders. Accessed November 21, 2020.
- Centers for Disease Control and Prevention. Hemophilia treatment center directory. Available from: https://dbdgateway.cdc.gov/HTCDirSearch.aspx. Accessed July 30, 2021.
- Baker JR, Crudder SO, Riske B, Bias V, Forsberg A. A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders. Am J Public Health. 2005;95(11):1910–1916. doi:10.2105/AJPH.2004.051318
- Lin TF, Carhill P, Huang JN, Baker JR. Capacity building for rare bleeding disorders in the remote commonwealth of the Northern Mariana Islands. Am J Public Health. 2016;106(4):658–661. doi:10.2105/AJPH.2016.303093
- Recht M, Konkle BA, Jackson S, et al. Recognizing the need for personalization of haemophilia patient-reported outcomes in the prophylaxis era. Haemophilia. 2016;22(6):825–832. doi:10.1111/hae.13066
- Roberts JC, Lattimore S, Recht M, et al. Goal Attainment Scaling for haemophilia (GAS-Hem): testing the feasibility of a new patient-centric outcome measure in people with haemophilia. Haemophilia. 2018;24(4):e199–e206. doi:10.1111/hae.13454
- Escobar MA, Brewer A, Caviglia H, et al. Recommendations on multidisciplinary management of elective surgery in people with haemophilia. Haemophilia. 2018;24(5):693–702. doi:10.1111/hae.13549
- Foundation for Women & Girls With Blood Disorders. Blood disorders resources. Available from: https://www.fwgbd.org/resources/blood-disorders. Accessed August 3, 2021.
- Chaudhury A, Sidonio R Jr., Jain N, et al. Women and girls with haemophilia and bleeding tendencies: outcomes related to menstruation, pregnancy, surgery and other bleeding episodes from a retrospective chart review. Haemophilia. 2021;27(2):293–304. doi:10.1111/hae.14232
- American College of Obestricians and Gynecologists. Management of acute abnormal uterine bleeding in nonpregnant reproductive-aged women. Obstet Gynecol. 2013;121:891–896. doi:10.1097/01.AOG.0000428646.67925.9a
- Kirtava A, Crudder S, Dilley A, Lally C, Evatt B. Trends in clinical management of women with von Willebrand disease: a survey of 75 women enrolled in haemophilia treatment centres in the United States. Haemophilia. 2004;10(2):158–161. doi:10.1046/j.1351-8216.2003.00832.x
- Angelini D, Konkle BA, Sood SL. Aging among persons with hemophilia: contemporary concerns. Semin Hematol. 2016;53(1):35–39. doi:10.1053/j.seminhematol.2015.10.004
- Mannucci PM. Aging with hemophilia: the challenge of appropriate drug prescription. Mediterr J Hematol Infect Dis. 2019;11(1):e2019056. doi:10.4084/mjhid.2019.056
- Schieve L, Byams V, Dupervil B, et al. Evaluation of CDC’s Hemophilia Surveillance Program — universal data collection (1998–2011) and community counts (2011–2019), United States. MMWR Surveill Summ. 2020;69(5):1–18. doi:10.15585/mmwr.ss6905a1
- Byams VR, Kouides PA, Kulkarni R, et al. Surveillance of female patients with inherited bleeding disorders in United States haemophilia treatment centres. Haemophilia. 2011;17(Suppl 1):6–13. doi:10.1111/j.1365-2516.2011.02558.x
- 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
- Pepper L. National databases improve bleeding disorders care. Available from: https://hemaware.org/bleeding-disorders-z/national-databases-improve-bleeding-disorders-care. Accessed October 25, 2020.
- American Thrombosis and Hemostasis Network. My life, our future research repository. Available from: https://athn.org/what-we-do/national-projects/mlof-research-repository.html. Accessed August 3, 2021.
- Soucie JM, Nuss R, Evatt B, et al. Mortality among males with hemophilia: relations with source of medical care. The Hemophilia Surveillance System Project Investigators. Blood. 2000;96(2):437–442.
- Soucie JM, Symons J 4th, Evatt B, et al. Home-based factor infusion therapy and hospitalization for bleeding complications among males with haemophilia. Haemophilia. 2001;7(2):198–206. doi:10.1046/j.1365-2516.2001.00484.x
- Okolo AI, Soucie JM, Grosse SD, et al. Population-based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources. Haemophilia. 2019;25(3):456–462. doi:10.1111/hae.13734
- American Thrombosis and Hemostasis Network. American thrombosis and hemostasis network: overview. Available from: https://athn.org/who-we-are/about/overview.html. Accessed November 21, 2020.
- National HTC Patient Satisfaction Survey. Third patient satisfaction survey of the U.S. Hemophilia Treatment Centers. Available from: http://www.htcsurvey.com/examplesurvey. Accessed April 17, 2021.
- Riske B, Shearer R, Baker JR. Patient satisfaction with US hemophilia treatment center care, teams and services: the first national survey. Haemophilia. 2020;26(6):991–998. doi:10.1111/hae.14176
- Lattimore S, Shearer R, Ashton M, Riske B, Baker J. Patient satisfaction with US hemophilia treatment centers: national trends 2014 and 2017. Presented at: Hempstasis and Thrombosis Research Society; May 2019; New Orleans, LA.
- Butler RB, Cheadle A, Aschman DJ, et al. National needs assessment of patients treated at the United States federally-funded hemophilia treatment centers. Haemophilia. 2016;22(1):e11–e17. doi:10.1111/hae.12810
- Shapiro A, Pipe SW, Geraghty S, et al. Hemophilia and managed care: partnering to achieve cost-effective care. Pharm Times. 2011;3(5):248–255.
- Tarantino MD, Pindolia VK. Hemophilia management via data collection and reporting: initial findings from the Comprehensive Care Sustainability Collaborative. J Manag Care Spec Pharm. 2017;23(1):51–56.
- United States Congress. The Public Health Service Act establishing the hemophilia diagnostic and treatment center program. In: Congress US, editor. Number 1131 of Public Law 9463. Washington, D.C.: Government Printing Office; 1975.
- National Hemophilia Foundation. What we do. Available from: https://www.hemophilia.org/who-we-are/our-story/what-we-do. Accessed August 5, 2021.
- Health Resources and Services Administration. Comprehensive hemophilia treatment centers. Available from: https://www.hrsa.gov/opa/eligibility-and-registration/specialty-clinics/hemophilia/index.html. Accessed August 5, 2021.
- Qian W, Lam TT, Lam HHW, Li CK, Cheung YT. Telehealth interventions for improving self-management in patients with hemophilia: scoping review of clinical studies. J Med Internet Res. 2019;21(7):e12340. doi:10.2196/12340
- Valentino LA, Skinner MW, Pipe SW. The role of telemedicine in the delivery of health care in the COVID-19 pandemic. Haemophilia. 2020;26(5):e230–e231. doi:10.1111/hae.14044
- Boccalandro EA, Dallari G, Mannucci PM. Telemedicine and telerehabilitation: current and forthcoming applications in haemophilia. Blood Transfus. 2019;17(5):385–390.