Articles and Key Findings on Hemophilia

Bleeding Surveillance
Learn about CDC’s past and current work in bleeding disorders.
(Published: March 16, 2020)

Women Can Have Hemophilia, Too
Learn how hemophilia is passed in families, and read Shellye’s inspirational story about her journey toward a diagnosis and treatment plan for hemophilia.
(Published: March 18, 2019)

What Is An Inhibitor?
Learn about inhibitors and read a personal story on living with an inhibitor.
(Published: March 19, 2018)

Making Strides Toward Preventing Inhibitors in Bleeding Disorders
CDC’s Division of Blood Disorders is committed to reducing the occurrence of inhibitors. Find out what they are doing to reach their goal.
(Published: April 17, 2017)

Do You Know About Bleeding Disorders?
Learn how you can support people with bleeding disorders.
(Published: March 13, 2017)

World Hemophilia Day 2016
Read and share the stories of people with hemophilia to raise awareness.
(Published: April 15, 2016)

Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres
Soucie JM, Miller CH, Dupervil B, Le B, Buckner TW. Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres. Haemophilia. 2020;00:1–7.
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Community counts: Evolution of a national surveillance system for bleeding disorders.
American Journal of Hematology. 2018;93(6):E137-E140.
Manco-Johnson MJ, Byams VR, Recht M, Dudley B, Dupervil B, Aschman DJ, Oakley M, Kapica S, Voutsis M, Humes S, Kulkarni R, Grant AM; the U.S. Haemophilia Treatment Network.
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The Frequency of Joint Hemorrhages and Procedures in Non-severe Hemophilia A versus B.
Blood Advances 2018; 2:2136-44.
Soucie JM, Monahan PE, Kulkarni R, Konkle BA, Mazepa MA; U.S. Hemophilia Treatment Center Network.
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Risk factors associated with invasive orthopedic interventions in males with hemophilia enrolled in the Universal Data Collection (UDC) program from 2000-2010.
Haemophilia 2018; In Press.
Tobase P, Lane H, Siddiqi A-E-A, Soucie JM, Ingram-Rich R, Ward RS, Gill J.

Relevance of Abusive Head Trauma to Intracranial Hemorrhages and Bleeding Disorders
Pediatrics 2018; 141(5).
Anderst J, Carpenter S, Presley R, Berkoff M, Wheeler A, Sidonio R, Soucie, JM..
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Prophylaxis use among males with haemophilia B in the United States.
Haemophilia 2017; 23:910-7.Ullman M, Zhang QC, Grosse SD, Recht M, Soucie JM;
Hemophilia Treatment Center Network Investigators.
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Limit of Detection and Threshold for Positivity of the Centers for Disease Control and Prevention Assay for Factor VIII Inhibitors.
J Thromb Haemost 2017; 15:1971-6.Miller CH, Boylan B, Shapiro AD, Lentz SR, Wicklund BM;
Hemophilia Inhibitor Research Study Investigators.
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The effects of joint disease, inhibitors and other complications on health-related quality of life among males with severe hemophilia A in the United States.
Haemophilia 2017; 23:e287 – e293.
Soucie JM, Grosse SD, Siddiqi A-E-A, Byams V, Thierry J, Zack MM, Shapiro A, Duncan N and the Hemophilia Treatment Centers Network.
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Prophylaxis usage, bleeding rates and joint outcomes of hemophilia 1999 – 2010: a surveillance project.
Blood 2017; 129:2368-2374
Manco-Johnson MJ, Soucie JM, Gill JC.
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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; 23:207-214.
Kulkarni R, Presley RJ, Lusher JM, Shapiro AD, Gill JC, Manco-Johnson M, Koerper MA, Abshire TC, DiMichele D, Hoots WK, Mathew P, Nugent DJ, Geraghty S, Evatt BL, Soucie JM.
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Men with severe hemophilia in the United States: birth cohort analysis of a large national database.
Blood. 2016; 127:3073-81.
Mazepa MA, Monahan PE, Baker JR, Riske BK, Soucie JM; US Hemophilia Treatment Center Network.
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Survey of the anti-factor IX immunoglobulin profiles in patients with hemophilia B using a fluorescence-based immunoassay.
Journal of Thrombosis and Haemostasis 2016; 14(10):1931-1940
Boylan B, Rice AS, Neff AT, Manco-Johnson MJ, Kempton CL, Miller CH, The Hemophilia Inhibitor Research Study Investigators.
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Characterization of the anti-factor VIII immunoglobulin profile in patients with hemophilia A using a fluorescence-based immunoassay.
Journal of Thrombosis and Haemostasis 2015; 13(1):47-53
Boylan B, Rice AS, Dunn AL, Tarantino MD, Brettler DB, Barrett JC, Miller CH, The Hemophilia Inhibitor Research Study Investigators.
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Haemophilia Centre Accreditation Systems and Networks of Centres of Expertise for Rare Diseases in Europe and North America (off subscription)
Blood Transfusion 2014; 12 Suppl 3
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The National Haemophilia Program Standards, Evaluation and Oversight Systems in the United States of America.
Blood Transfus 2014; 12 (Suppl 3): s542-8.
Skinner MW, Soucie JM, McLaughlin K.
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Prevalent inhibitors in haemophilia B subjects enrolled in the Universal Data Collection database
Haemophilia; 2014; Volume 20, Number 1, pp. 25-31
Puetz J, Soucie JM, Kempton CL, Monahan PE; Hemophilia Treatment Center Network Investigators.
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Identifying information needs among children and teens living with haemophilia
Haemophilia; 2014; Volume 20, Number 1, pp. 1-8
Simmons GM, Frick N, Wang A, Miller ME, Fraqueiro D.
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Association of overweight and obesity with the use of self and home-based infusion therapy among haemophilic men.
Haemophilia; 2013; doi: 10.1111/hae.12303.
Ullman M, Zhang QC, Brown D, Grant A, Soucie JM; on Behalf of the Hemophilia Treatment Center Network Investigators
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A study of prospective surveillance for inhibitors among persons with haemophilia in the United States
Haemophilia; 2013; doi: 10.1111/hae.12302
Soucie JM, Miller CH, Kelly FM, Payne AB, Creary M, Bockenstedt PL, Kempton CL, Manco-Johnson MJ, Neff AT, the Haemophilia Inhibitor Research Study Investigators
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Comparison of Clot-based, Chromogenic, and Fluorescence Assays for Measurement of Factor VIII Inhibitors in the U.S. Hemophilia Inhibitor Research Study
Journal of Thrombosis and Haemostasis; July 2013; Volume 11, Number 7, pp. 1300-1309
Miller CH, Rice AS, Boylan B, Shapiro AD, Lentz SR, Wicklund BM, Kelly FM, Soucie JM; The Hemophilia Inhibitor Research Study Investigators.
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Prevalence of clinical hip abnormalities in haemophilia A and B: an analysis of the UDC database
Haemophilia; 2013; Volume 19, Number 3, pp. 424-433
Kelly D, Zhang QC, Soucie JM, Manco-Johnson M, Dimichele D, Joint Outcome Subcommittee of the Coordinating Committee for the Universal Data Collection Database and the Hemophilia Treatment Center Network Investigators.
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The CDC Hemophilia A Mutation Project (CHAMP) mutation list: a new online resource
Human Mutation; Feb 2013; Volume 34, Number 2, pp. E2382-E2392
Payne AB, Miller CH, Kelly FM, Soucie JM, Craig Hooper W.
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Evidence for the continued transmission of parvovirus B19 in patients with bleeding disorders treated with plasma-derived factor concentrates
Transfusion; May 2013; doi: 10.1111/trf.12153
Soucie JM, Monahan PE, Kulkarni R, De Staercke C, Recht M, Chitlur MB, Gruppo R, Hooper CW, Kessler C, Manco-Johnson MJ, Powell J, Pyle M, Riske B, Sabio H, Trimble S.
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Similarity in joint function limitation in Type 3 von Willebrand’s disease and moderate haemophilia A
Haemophilia; July 2013; Volume 19; Number 4, pp:595-601
Sood SL, Cuker A, Wang C, Metjian AD, Chiang EY, Soucie JM, Konkle BA; HTCN Study Investigators.
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The effect of secondary prophylaxis versus episodic treatment on the range of motion of target joints in patients with haemophilia.
British Journal of Haematology; May 2013; Volume 161; Number 3, pp:424-433
Gupta S, Siddiqi AE, Soucie JM, Manco-Johnson M, Kulkarni R, Lane H, Ingram-Rich R, Gill JC, Joint Outcomes Committee of Universal Data Collection and the Hemophilia Treatment Center Network.
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Prevalence of malignancies among U.S. male patients with haemophilia: a review of the Haemophilia Surveillance System
Haemophilia; July 2012; Volume 18; Number 4, pp:532-539
Dunn AL, Austin H, Soucie JM.
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Utility of multiplex ligation-dependent probe amplification (MLPA) for hemophilia mutation screening
Journal of Thrombosis and Haemostasis; September 2012; Volume 10; Number 9, pp:1951-1954
Payne AB, Bean CJ, Hooper WC, Miller CH.
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Public Health Surveillance and data collection: general principles and impact on hemophilia care
Hematology; April 2012; Volume 17; pp:S144-S146
Soucie JM.
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Healthcare expenditures for males with haemophilia and employer-sponsored insurance in the United States, 2008
Haemophilia; March 2012; Volume 18; Number 2; pp:268-275
Guh S, Grosse SD, McAlister S, Kessler CM, Soucie JM.
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Health care expenditures for Medicaid-covered males with haemophilia in the United States, 2008
Haemophilia; March 2012; Volume 18; Number 2; pp:276-283
Guh S, Grosse SD, McAlister S, Kessler CM, Soucie JM.
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Physical functioning in boys with hemophilia in the U.S.
American Journal of Preventive Medicine; December 2011; Volume 41; pp:S360-368
Monahan PE, Baker JR, Riske B, Soucie JM.
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F8 and F9 mutations in US haemophilia patients: correlation with history of inhibitor and race/ethnicity
Haemophilia; May 2012; Volume 8; Number 3; pp:375-382
Miller CH, Benson J, Ellingsen D, Drigger J, Payne A, Kelly FM, Soucie JM, Hooper CW, the Hemophilia Inhibitor Research Study Investigators.
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Prevalence and risk factors of cardiovascular disease (CVD) events among patients wtih haemophilia: experience of a single haemophilia treatment centre in the United States (US)
Haemophilia; July 2011; Volume 17; Number 4;  pp:597-604 Sharathkumar AA, Soucie JM, Trawinksi B, Greist A, Shapiro AD.
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The longitudinal effect of body adiposity on joint mobility in your males with Haemophilia A
Haemophilia; March 2011; Volume 17; Number 2; pp:196-203 Soucie JM, Wang C, Siddiqi A, Kulkarni R, Recht M, Konkle BA; Hemophilia Treatment Center Network.
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Associations between intracranial haemorrhage and prescribed prophylaxis in a large cohort of haemophilia patients in the United States
British Journal of Haemotology; January 2011; Volume 152; Number 2; pp:211-216
Witmer C, Presley R, Kulkarni R, Soucie JM, Manno CS, Raffini L.
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In non-severe hemophilia A the risk of inhibitor after intensive factor treatment is greater in older patients: a case-control study
Journal of Thrombosis and Haemostasis; October 2010; Volume 8; Number 10; pp:2224-2231
Kempton CL, Soucie JM, Miller CH, Hooper C, Escobar MA, Cohen AJ, Key NS, Thompson AR, Abshire TC.
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Burden of disease resulting from hemophilia in the U.S.
American Journal of Preventive Medicine; April 2010; Volume 38; pp:S482-S488
Siddiqi AE, Ebrahim SH, Soucie JM, Parker CS, Atrash HK.
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The universal data collection surveillance system for rare bleeding disorders
American Journal of Preventive Medicine; April 2010; Volume 38; pp:S475-S481
Soucie JM, McAlister S, McClellan A, Oakley M, Su Y.
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Assessing emerging infectious threats to blood safety for the blood disorders community
American Journal of Preventive Medicine; April 2010; Volume 38; pp:S468-S474
Trimble SR, Parker CS, Grant AM, Soucie JM, Reyes N.
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Sites of Initial Bleeding Episodes, Mode of Delivery and Age of Diagnosis in Babies with Haemophilia Diagnosed Before the Age of 2 Years
Haemophilia; November 2009; Volume 15, Number 6, pp. 1281-1290(10)
Kulkarni R, et al.
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Models of Comprehensive, Multidisciplinary Care for Individuals in the United States with Genetic Disorders
Pediatrics 2009; 123(1):407-412
Grosse SD, Schechter MS, Kulkarni R, Lloyd-Puryear MA, Strickland B, Trevathan E.
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Septic Arthritis in Males with Haemophilia
Haemophilia; 2008; 14:494-503
Ashrani AA, Key NS, Soucie JM, Duffy N, Forsyth A, Geraghty S.
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Linking the World with Training and Research for Improving Haemophilia Care
Haemophilia; 2008; 14 Suppl 3:43-48
Srivastava A, Hoots WK, Soucie JM, Ludlum CA.
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Prophylaxis Versus Episodic Treatment to Prevent Joint Disease in Boys with Severe Hemophilia
New England Journal of Medicine; August 9, 2007; 357(6):535-544
Manco-Johnson MJ, et al.
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Incidence of Inhibitors in a Cohort of 838 Males with Hemophilia A Previously Treated with Factor VIII Concentrates
Journal of Thrombosis and Haemostasis; 2006; 4(12):2576-2581
Kempton CL, Soucie JM, Abshire TC.
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Infectious Disease in the Blood Supply and the Public Health Response
Seminars in Hematology; 43(suppl 3) S4-S9; 2006
Evatt BL.
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The Tragic History of AIDS in the Hemophilia Population, 1982-1984
Journal of Thrombosis and Haemostasis; 2006 Nov; 4(11):2295-301
Evatt BL.
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The Natural Evolution of Haemophilia Care: Developing and Sustaining Comprehensive Care Globally
Haemophilia; 2006 Jul; 12 Suppl 3:13-21
Evatt BL.
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Unresolved Issues in Diagnosis and Management of Inherited Bleeding Disorders in the Perinatal Period: A White Paper of the Perinatal Task Force of the Medical and Scientific Advisory Council of the National Hemophilia Foundation, USA
Haemophilia; 2006 May; 12(3):205-11
Kulkarni R, Ponder KP, James AH, Soucie JM, Koerper M, Hoots WK, Lusher JM.
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Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey
American Journal of Public Health; 2006 September; 96(9): 1618–1622
Nazzaro A, Owens S, Hoots WK, Larson KL.
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A Model for a Regional System of Care to Promote the Health and Well-Being of People with Rare Chronic Genetic Disorders
American Journal of Public Health; 2005; 95:1910-1916
Baker JR, Crudder SO, Riske R, Bias V, Forsberg A.
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National Haemophilia Programme Development in the Republic of Georgia
Haemophilia; 2005; 11:529-534
Kirtava A, Soucie M, Evatt B, Mdivinishvili M, Abashidze M, Iosava G.
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HIV Infection and Thrombocytopenia
Current Hematology Reports 2005; 4:149-153
Evatt B
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Prevalence and Risk Factors for Heart Disease Among Males with Hemophilia
American Journal of Hematology; 2005; 79(36):42
Kulkarni R, Soucie JM, Evatt BL.
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Parvovirus B19 Transmission by High-Purity Factor VIII Concentrate
Transfusion; 2005; 45:1003-1010
Wu C, et al.
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