lunes, 21 de abril de 2014

CDC - Hemophilia, Articles - NCBDDD

CDC - Hemophilia, Articles - NCBDDD



Articles

Highlighted Articles

Featured Articles

Hemophilia & Health
14 weeks to a healthier you.
(Published: April 14, 2014)
Hemophilia World Day: Test Your KnowledgeHow much do you know about hemophilia? Take our quiz to find out.
(Published: April 15, 2013)
World Hemophilia Day: One Family's
Learn about one family's experience with hemophilia.
(Published: April 16, 2012)

Key Findings

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

Scientific Articles

Photo: A boy sitting on a stack of books* These CDC scientific articles are listed in order of date published, from 2005 to present.
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
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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, 2008Haemophilia; 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, 2008Haemophilia; 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 adn 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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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.

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