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)

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

Recent Scientific Articles

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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. https://doi.org/10.1111/hae.14202
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. https://doi.org/10.1002/rth2.12347
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. https://doi.org/10.1111/hae.14176
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. http://dx.doi.org/10.15585/mmwr.ss6905a1
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. https://doi.org/10.1111/hae.13998
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. https://doi.org/10.1111/hae.13847
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. https://doi.org/10.1111/hae.13734
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. https://doi.org/10.1111/hae.13827
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. https://doi.org/10.1111/hae.13737
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. https://doi.org/10.1111/hae.13435
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. https://doi.org/10.1002/ajh.25076
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. https://doi.org/10.1182/bloodadvances.2018020552
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. https://doi.org/10.1111/hae.13511
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. https://doi.org/10.1542/peds.2017-3485
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. https://doi.org/10.1111/hae.13317
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. https://doi.org/10.1111/jth.13795
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. https://doi.org/10.1111/hae.13275
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. https://doi.org/10.1182/blood-2016-02-683169
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. https://doi.org/10.1111/hae.13081
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. https://doi.org/10.1182/blood-2015-10-675140
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. https://doi.org/10.1111/jth.13438
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. https://doi.org/10.1111/jth.12768
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.