Articles About Blood Disorders Universal Data Collection (UDC)

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Recent Articles

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

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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(5):1–18.
Schieve LA, Byams VR, Dupervil B, et al.
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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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US Hemophilia Treatment Center Network. Higher rates of bleeding and use of treatment products among young boys compared to girls with von Willebrand disease.
Am J Hematol. 2020;95(1):10–17.
Abe K, Dupervil B, O’Brien SH, et al.
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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;24(6):964–970.
Tobase P, Lane H, Siddiqi A-E-A, et al.
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Relevance of Abusive Head Trauma to Intracranial Hemorrhages and Bleeding Disorders.
Pediatrics 2018;141(5).
Anderst J, Carpenter S, Presley R, et al.
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Differences in bleeding phenotype and provider interventions in postmenarchal adolescents when compared to adult women with bleeding disorders and heavy menstrual bleeding.
Haemophilia 2018;24(1):63–69.
Srivaths LV, Zhang QC, Byams VR, et al.
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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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The effects of joint disease, inhibitors and other complications on health-related quality of life among males with severe haemophilia A in the United States.
Haemophilia 2017;23:e287–e293.
Soucie JM, Grosse SD, Siddiqi A-E-A, et al.
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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, Presley RJ, Lusher JM, et al.
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Declining trends in invasive orthopedic interventions for people with hemophilia enrolled in the Universal Data Collection program (2000–2010).
Haemophilia 2016;22(4):604–14.
Tobase P, Lane H, Siddiqi AEA, Ingram-Rich R, Ward RS.
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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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Evaluation of von Willebrand factor phenotypes and genotypes in hemophilia A patients with and without identified F8 mutations.
Journal of Thrombosis and Haemostasis 2015;13(6):1036–42.
Boylan B, Rice AS, De Staercke C, et al.
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Characteristics of hemophilia patients with factor VIII inhibitors detected by prospective screening. American Journal of Hematology 2015;90(10):871–6.
Miller CH, Rice AS, Boylan B, et al.
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Improving the performance of factor VIII inhibitor tests in hemophilia A.
Thrombosis Research 2015;136(6):1047–1048.
Miller CH.
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A public health approach to the prevention of inhibitors in hemophilia.
American Journal of Preventive Medicine 2014;47(5):669–673.
Soucie JM, Miller CH, Kelly FM, Oakley M, Brown DL, Kucab P.
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Hepatitis B vaccination is effective by subcutaneous route in children with bleeding disorders: A Universal Data Collection database analysis.
Haemophilia 2015;21(1):e39–e43.
Carpenter SL, Soucie JM, Presley, et al.
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Impact of inhibitors on hemophilia A mortality in the United States.
Am J Hematol. 2015;90(5):400–5.
Walsh CE, Soucie JM, Miller CH, the United States Hemophilia Treatment Center Network.
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Association of overweight and obesity with the use of self and home-based infusion therapy among haemophilic men.
Haemophilia 2014;20(3):340–348.
Ullman M, Zhang QC, Brown D, Grant A, Soucie JM, Hemophilia Treatment Center Network Investigators.
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Females with FVIII and FIX deficiency have reduced joint range of motion.
Am J Hematol. 2014;89:831–836.
Sidonio RF, Mili FD, Li T, et al.
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Functional outcomes following ankle arthrodesis in males with hemophilia: analyses using the CDC’s Universal Data Collection surveillance project.
Haemophilia 2014;20(5):709–715.
Lane H, Siddiqi AEA, Ingram-Rich R, et al.
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Prevalent inhibitors in haemophilia B subjects enrolled in the Universal Data Collection database.
Haemophilia 2014;20:25–31.
Puetz J, Soucie JM, Kemptom CL, Monahan PE, Hemophilia Treatment Center Network (HTCN) Investigators.
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Severe and moderate haemophilia A and B in US females.
Haemophilia 2014;20:e136–e143.
Di Michele DM, Gibb C, Lefkowitz JM, Ni Q, Gerber LM, Ganguly A.
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Similarity in Joint Function Limitation in Type 3 Von Willebrand Disease and Moderate Haemophilia A.
Haemophilia 2013;19(4):595–601.
Sood S, Cuker A, Wang C, et al.
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Evidence for the Transmission of Parvovirus B19 in Patients with Bleeding Disorders Treated with Plasma-derived Factor Concentrates in the Era of Nucleic Acid Test (NAT) Screening.
Transfusion 2013;53(5):1143–1144.
Soucie JM, De Staercke C, Monahan PE, et al.
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Prevalence of Clinical Hip Abnormalities in Hemophilia A and B: An Analysis of the UDC Database.
Haemophilia 2013;19(3):426-431.
Kelly D, Zhang QC, Soucie JM, Manco-Johnson M, et al.
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The Effect of Secondary Prophylaxis versus Episodic Treatment on the Range of Motion of Target Joints in Patients with Hemophilia.
British Journal of Haematology 2013;161(3):424–433.
Gupta S, Siddiqi A, Soucie JM, et al.
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Increased prevalence of inhibitors in Hispanic patients with severe haemophilia A enrolled in the Universal Data Collection database.
Haemophilia 2012;18(3):e260–e265.
Carpenter SL, Soucie JM, Sterner S, Presley, Hemophilia Treatment Center Network (HTCN) Investigators.
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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 Haematology 2011;152(2):211–216.
Witmer C, Presley R, Kulkarni R, Soucie JM, Manno CS, Raffini L.
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Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia.
AJPM. 2011;41:S338–S345.
Baker JR, Riske B, Voutsis M, Cutter S, Presley R.
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Physical Functioning in Boys with Hemophilia in the U.S.
AJPM. 2011;43:S360–S368.
Monahan PE, Baker JR, Riske B, Soucie JM.
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Surveillance of female patients with inherited bleeding disorders in United States haemophilia treatment centres.
Haemophilia 2011;17(Suppl 1):6–3.
Byams VR, Kouides p, Kulkarni R, et al.
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The longitudinal effect of body adiposity on joint mobility in young males with hemophilia A.
Haemophilia 2011;17(2):196–203.
Soucie JM, Wang C, Siddiqi A, et al.
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Bleeding disorders in neonates.
Haemophilia 2010;16(S5):168–174.
Kenet G, Chan AKC, Soucie JM, Kulkarni R.
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High school completion rates among men with hemophilia.
American Journal of Preventative Medicine 2010;38(4 Suppl):S489–S494.
Drake JH, Soucie JM, Cutter SC, Forsberg AD, Baker JR, Riske B.
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Bleeding Symptoms and Laboratory Correlation in Patients with Severe von Willebrand Disease.
Haemophilia 2009;15(4):918–925.
Metjian AD, et al.
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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 2009;15(6):1281–1290.
Kulkarni R, et al.
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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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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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Parvovirus B19 Transmission by High-Purity Factor VIII Concentrate
Transfusion 2005;45:1003–1010.
Wu C, et al.
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Human Parvovirus B19 in young males with hemophilia A: associations with treatment product exposure and joint range-of-motion limitation.
Transfusion 2004;8:1179–1184.
Soucie JM, Siwak EB, Hooper WC, Evatt BL, Hollinger FB.
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Joint range of motion among young males with hemophilia: Prevalence and risk factors.
Blood 2004;103:2467–2473.
Soucie JM, Cianfrini C, Janco RL, et al.
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Blood Safety Monitoring Among Persons with Bleeding Disorders—United States, May 1998–June 2002.
MMWR Morbidity and Mortality Weekly Report 2003;51(51):1152–1154.
Hollinger FB, Kirtava A, Oakley M, Soucie M, Evatt B.
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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.