Articles and Key Findings on Hemophilia

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Key Findings

Study Finds Men with Hemophilia Have Higher Rates of Depression, Anxiety, and Obesity than the General U.S. Male Population
(Published: January 26, 2023)

Hemophilia Characteristics Among Women and Girls Receiving Care in Specialized Treatment Centers in the United States
(Published: November 3, 2021)

Data from CDC’s hemophilia surveillance (health monitoring) programs have informed public health and clinical guidelines and practices to prevent or reduce hemophilia-related health problems
(Published: September 8, 2020)

A New Study of Hemophilia Occurrence Finds Many More Cases in the United States
(Published: July 1, 2020)

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)

Feature Articles

Test Your Knowledge of Bleeding Disorders
Learn about signs and symptoms of hemophilia and VWD and take a quiz to test your knowledge.
(Published: March 1, 2022)

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)

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)

Recent Scientific Articles

Prevalence of comorbid conditions among older males with haemophilia receiving care in haemophilia treatment centers in the United States.
Haemophilia 2022;28(6): 986-995
Soucie JM, Le B, Dupervil B, Poston JN
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Occurrence rates of inherited bleeding disorders other than haemophilia and von Willebrand disease among people receiving care in specialized treatment centres in the United States.
Haemophilia 2022;28(3): e75-e78.
Miller CH, Soucie MJ, Byams VR, Payne AB, Abe K, Lewandowska M, Shapiro AD
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Validation of the chromogenic Bethesda assay for factor VIII inhibitors in hemophilia A patients receiving Emicizumab.
Int J Lab Hematol 2021;43(2): e84-e86
Miller CH, Boylan B, Payne AB, Driggers J, & Bean, CJ
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Women and girls with haemophilia receiving care at specialized haemophilia treatment centres in the United States.
Haemophilia 2021;27(6): 1037-1044.
Miller CH, Soucie MJ, Byams VR, Payne AB, Sidonio RF Jr, Buckner TW, Bean CJ
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The chromogenic Bethesda assay and the Nijmegen-Bethesda assay for factor VIII inhibitors in hemophilia A patients: Are they equivalent?
J Thromb Haemost 2021;19(7): 1835-1837
Miller CH, Boylan B
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Evaluation of anti-factor VIII antibody levels in patients with haemophilia A receiving immune tolerance induction therapy or bypassing agents.
Haemophilia 2020;27(1):e40-e50.
Boylan B, Niemeyer GP, Werner B, Miller CH.
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Hemophilia without prophylaxis: Assessment of joint range of motion and factor activity.
Res Pract Thromb Haemost 2020;4(6):1035-1045.
Wang M, Recht M, Iyer NN, Cooper DL, Soucie JM.
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Patient satisfaction with US Hemophilia Treatment Center Care, Teams and Services: The first national survey.
Haemophilia 2020;26(6):991-998.
Riske B, Shearer R, Baker JR.
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Evaluation of CDC’s Hemophilia Surveillance Program — Universal Data Collection (1998–2011) and Community Counts (2011–2019), United States.
MMWR Surveill Summ 2020;69(No. SS-5):1–18.
Schieve LA, Byams VR, Dupervil B, Oakley MA, Miller CH, Soucie JM, Abe K, Bean CJ, Hooper WC.
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Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres.
Haemophilia 2020;26(3):487-493.
Soucie JM, Miller CH, Dupervil B, Le B, Buckner TW.
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Potential of the Community Counts registry to characterize rare bleeding disorders.
Haemophilia 2019;25(6):1045-1050.
Gupta S, Acharya S, Roberson C, Lail A, Soucie JM, Shapiro A.
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Population-based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources.
Haemophilia 2019;25(3):456-462.
Okolo AI, Soucie JM, Grosse SD, Roberson C, Janson IA, Allen M, Shapiro AD.
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Reagent substitution in the chromogenic Bethesda assay for factor VIII inhibitors.
Haemophilia 2019; 25(5):e342-e344.
Payne AB, Miller CH, Ellingsen D, Driggers J, Boylan B, Bean CJ.
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Origins and organization of the NHLBI State of the Science Workshop: Generating a national blueprint for future research on factor VIII inhibitors.
Haemophilia 2019;25(4):575-580.
Sabatino DE, Pipe SW, Nugent DJ, Soucie JM, Hooper WC, Hoots WK, DiMichele DM.
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Effects of pre-analytical heat treatment in factor VIII (FVIII) inhibitor assays on FVIII antibody levels.
Haemophilia 2018;24(3):487-491.
Boylan B, Miller CH.
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Community counts: Evolution of a national surveillance system for bleeding disorders.
Am J Hematol 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; U.S. Haemophilia Treatment Center Network.
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The frequency of joint hemorrhages and procedures in non-severe hemophilia A versus B.
Blood Advances 2018;2(16):2136-2144.
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 to 2010.
Haemophilia 2018;24(6):964-970.
Tobase P, Lane H, Siddiqi A-E-A, Soucie JM, Ingram-Rich R, Ward RS, Gill JC.
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Relevance of abusive head trauma to intracranial hemorrhages and bleeding disorders.
Pediatrics 2018;141(5):e20173485.
Anderst JD, Carpenter SL, Presley R, Berkoff MC, Wheeler AP, Sidonio RF, Soucie, JM.
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Prophylaxis use among males with haemophilia B in the United States.
Haemophilia 2017;23(6):910-917.
Ullman M, Zhang QC, Grosse SD, Recht M, Soucie JM; U.S. 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(1):1971-1976.
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(4):e287 – e293.
Soucie JM, Grosse SD, Siddiqi A-E-A, Byams V, Thierry J, Zack MM, Shapiro A, Duncan N; U.S. Hemophilia Treatment Center Network.
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Prophylaxis usage, bleeding rates and joint outcomes of hemophilia 1999 – 2010: A surveillance project.
Blood 2017;129(17):2368-2374.
Manco-Johnson MJ, Soucie JM, Gill JC; Joint Outcomes Committee of the Universal Data Collection, U.S. Hemophilia Treatment Center Network
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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(2):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(24):3073-3081.
Mazepa MA, Monahan PE, Baker JR, Riske BK, Soucie JM; U.S. 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.
J Thromb Haemost 2016;14(10):1931-1940.
Boylan B, Rice AS, Neff AT, Manco-Johnson MJ, Kempton CL, Miller CH; 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.
J Thromb Haemost 2015;13(1):47-53.
Boylan B, Rice AS, Dunn AL, Tarantino MD, Brettler DB, Barrett JC, Miller CH; Hemophilia Inhibitor Research Study Investigators.
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All Articles

Search a database of articles that have been published by CDC authors within the National Center on Birth Defects and Developmental Disabilities from 1990 to present.