At a glance
Below is a list of recent scientific articles generated from two CDC surveillance programs that track hemophilia and other bleeding disorders among persons in the United States who receive care in federally funded hemophilia treatment centers (HTCs).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Community Counts: 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.