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Highlighted Articles

Key Findings: Study Shows That Regular Treatment to Prevent Bleeding Episodes Is Used Less Frequently Among Adults Than Children with Hemophilia B
(Published: December 4, 2017)

Key Findings: New Study Shows That Regular Treatment for Hemophilia Starting Early in Life Can Prevent Joint Disease
(Published: April 10, 2017)

Key Findings: New Method Designed to Detect the Type of Antibodies Linked to Inhibitor Development Among People with Hemophilia A and B
(Published: January 18, 2017)

Key Findings: Study of Hemophilia Care Outcomes over 50 Year Span Reveals Progress, Ongoing Health Challenges
(Published March 16, 2016)

Inhibitors and Risk of Death
Does having an inhibitor increase your risk of death?
(Published April 2, 2015)

Hemophilia Carriers and Joint Abnormalities
New study finds evidence of joint abnormalities among hemophilia carriers.
(Published March 20, 2015)

Does the Level of Protection Against the Hepatitis B Virus Differ Based on the Way in Which the Vaccine is Given (for example, injected into a muscle or injected under the skin)?
(Published November 22, 2014)

Platelet Function Testing
Platelet function testing can determine the cause of excessive bleeding but is not well studied.
(Published May 1, 2014)

Hemophilia and Inhibitors
All people with hemophilia are at risk for developing inhibitors
(Published April 15, 2014)

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)

Scientific Articles

* These CDC scientific articles are listed in order of date published, from the present to 2005.

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.
[Read article]

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.
[Read article]

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
[Read article]

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.
[Read article]

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.
[Read summary]

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.
[Read summary]

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
[Read summary]

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
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

Public Health Surveillance and data collection: general principles and impact on hemophilia care
Hematology; April 2012; Volume 17; pp:S144-S146
Soucie JM.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

Septic Arthritis in Males with Haemophilia
Haemophilia; 2008; 14:494-503
Ashrani AA, Key NS, Soucie JM, Duffy N, Forsyth A, Geraghty S.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

Infectious Disease in the Blood Supply and the Public Health Response
Seminars in Hematology; 43(suppl 3) S4-S9; 2006
Evatt BL.
[Read summary]

The Tragic History of AIDS in the Hemophilia Population, 1982-1984
Journal of Thrombosis and Haemostasis; 2006 Nov; 4(11):2295-301
Evatt BL.
[Read summary]

The Natural Evolution of Haemophilia Care: Developing and Sustaining Comprehensive Care Globally
Haemophilia; 2006 Jul; 12 Suppl 3:13-21
Evatt BL.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

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.
[Read summary]

HIV Infection and Thrombocytopenia
Current Hematology Reports 2005; 4:149-153
Evatt B
[Read summary]

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.
[Read summary]

Parvovirus B19 Transmission by High-Purity Factor VIII Concentrate
Transfusion; 2005; 45:1003-1010
Wu C, et al.
[Read summary]

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