Articles on Community Counts and UDC
Recent Scientific Articles
Community Counts
Bleeding disorders in women and girls: State of the science and CDC collaborative programs.
J Women’s Health 2022;31(3): 301–309
Byams VR, Miller CH, Bethea FM, Abe K, Bean CJ, Schieve LA
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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 JM, 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 JM, Byams VR, Payne AB, Sidonio RF Jr, Buckner TW, Bean CJ
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Occurrence rates of von Willebrand disease among people receiving care in specialized treatment centers in the United States.
Haemophilia 2021;27(3): 445–453
Soucie JM, Miller CH, Byams, VB, Payne AB, Abe K, Sidonio RF Jr, Kouides PA
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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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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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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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Evolution of a national surveillance system for bleeding disorders.
Am J Hematol 2018;93(6): e137–e140
Manco-Johnson M, Byams V, Recht M, Dudley B, Dupervil B, Aschman D, Oakley M, Kapica S, Voutsis M, Humes S, Kulkarni R, Grant AM; U.S. Hemophilia Treatment Center Network
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Universal Data Collection
Characteristics, complications, and sites of bleeding among infants and toddlers less than 2 years of age with VWD.
Blood Adv 2021;5(8): 2079–2086
Dupervil B, Abe K, O’Brien SH, Oakley M, Kulkarni R, Thornburg CD, Byams VR, Soucie JM
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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, Oakley M, Kulkarni R, Gill JC, Byams VR, Soucie JM; U.S. Hemophilia Treatment Center Network
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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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The frequency of joint hemorrhages and procedures in non-severe hemophilia A versus B.
Blood Adv 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 S, Gill JC; Hemophilia Treatment Centers Network Investigators
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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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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, Dietrich JE, James AH, Kouides PA, Kulkarni R; Hemophilia Treatment Centers Network Investigators
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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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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 M, 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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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 A-E-A, Ingram-Rich R, Ward RS; Universal Data Collection Joint Outcome Working Group and Hemophilia Treatment Center Network (HTCN) Study Investigators
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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 RJ, Ragni MV, Wicklund BM, Silvey M, Davidson H; Hemophilia Treatment Center Network Investigators
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Impact of inhibitors on hemophilia A mortality in the United States.
Am J Hematol 2015;90(5): 400–405
Walsh CE, Soucie JM, Miller CH; U.S. 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, Miller CH, Hooper WC, DeBaun MR, Soucie JM; Hemophilia Treatment Centers Network
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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, Tobase, P, Ward RS; Universal Data Collection Joint Outcome Working Group; Hemophilia Treatment Center Network Study Investigators
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Prevalent inhibitors in haemophilia B subjects enrolled in the Universal Data Collection database.
Haemophilia 2014;20(1): 25–31
Puetz J, Soucie JM, Kemptom CL, Monahan PE; Hemophilia Treatment Center Network 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, Metjian AD, Chiang EY, Soucie JM, Konkle BA; Hemophilia Treatment Center Network Investigators
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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, Recht M, Chitlur MB, Gruppo R, Hooper WC, Kessler C, Kulkarni R, Manco-Johnson M, Powell J, Pyle M, Riske B, Sabio H, Trimble S; U.S. Hemophilia Treatment Center Network Investigators
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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, 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 effect of secondary prophylaxis versus episodic treatment on the range of motion of target joints in patients with hemophilia.
Br J Haematol 2013;161(3): 424–433.
Gupta S, Siddiqi A-E-A, Soucie JM, Manco-Johnson M, Kulkarni R, Lane H, Ingram-Rich R, Gill JC; Joint Outcomes Committee of Universal Data Collection and the U.S. Hemophilia Treatment Center Network
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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 R; Hemophilia Treatment Center Network Investigators
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Associations between intracranial haemorrhage and prescribed prophylaxis in a large cohort of haemophilia patients in the United States.
Br J Haematol 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.
Am J Prev Med 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.
Am J Prev Med 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): 6–13.
Byams VR, Kouides PA, Kulkarni R, Baker JR, Brown DL, Gill JC, Grant AM, James AH, Konkle BA, Maahs J, Dumas MM, McAlister S, Nance D, Nugent D, Philipp CS, Soucie JM, Stang E; Hemophilia Treatment Centers Network Investigators
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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, Kulkarni R, Recht M, Konkle BA; Hemophilia Treatment Center Network
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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.
Am J Prev Med 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, Wang C, Sood SL, Cuker A, Peterson SM, Soucie JM, Konkle BA; Hemophilia Treatment Centers Network Investigators
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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: A report from The Centers for Disease Control and Prevention’s (CDC) Universal Data Collection (UDC) project.
Haemophilia 2009;15(6): 1281–1290
Kulkarni R, Soucie JM, Lusher J, Presley R, Shapiro A, Gill J, Manco-Johnson M, Koerper M, Mathew P, Abshire T, DiMichele D, Hoots K, Janco R, Nugent D, Geraghty S, Evatt B; Hemophilia Treatment Center Network Investigators
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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; Universal Data Collection Project Investigators
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Incidence of inhibitors in a cohort of 838 males with hemophilia A previously treated with factor VIII concentrates.
J Thromb Haemost 2006;4(12): 2576–2581
Kempton CL, Soucie JM, Abshire TC
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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; Universal Data Collection Project Working Group
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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, Kulkarni R, Hambleton J, Evatt B, Forsyth A, Geraghty S, Hoots K, Abshire T, Curtis R, Forsberg A, Huszti H, Wagner M, White GC II
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Blood safety monitoring among persons with bleeding disorders—United States, May 1998–June 2002.
MMWR 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.