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Hematology Volume 17, 2012 - Issue sup1
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Original Article

Public health surveillance and data collection: general principles and impact on hemophilia care

J Michael SoucieCenters for Disease Control and PreventionDivision of Blood Disorders, National Centers for Birth Defects and Developmental Disabilities, Atlanta, GA, USACorrespondence[email protected]
Pages s144-s146 | Published online: 12 Nov 2013

References

  • Teutsch SM, Thacker SB. Planning a public health surveillance system. Epidemiol Bull. 1995;16:1–6.
  • Soucie JM, Jackson D, Evatt B. The occurrence of hemophilia in the United States. Am J Hematol. 1998;59:288–94.
  • Baker JR, Crudder SO, Riske B, Bias V, Forsberg A. A model for a regional system of care to promote health and well-being for people with rare chronic genetic disorders. Am J Public Health. 2005;95:1910–6.
  • Soucie JM, Nuss R, Evatt B, Abdelhak A, Cowan L, Hill H, et al.. Mortality among males with hemophilia: relations with source of medical care. Blood. 2000;96:437–42.
  • Soucie JM, Symons J, Evatt B, Brettler D, Huszti H, Linden J, et al.. Home-based factor infusion therapy and hospitalization for bleeding complications among males with hemophilia. Haemophilia. 2001;7:198–206.
  • Nuss R, Soucie JM, Evatt B, and the Hemophilia Surveillance System Project Investigators. Changes in the occurrence of and risk factors for hemophilia-associated intracranial hemorrhage. Am J Hematol. 2001;68:37–42.
  • Kulkarni R, Soucie JM, Evatt BL. Prevalence and risk factors for heart disease among males with hemophilia. Am J Hematol. 2005;79:36–42.
  • Kulkarni R, Soucie JM, Evatt BL. Renal disease among males with hemophilia. Haemophilia. 2003;9:703–10.
  • Soucie JM, Richardson LC, Evatt B, Linden J, Ewenstein BM, Stein S, et al.. Risk factors for infection with hepatitis B and hepatitis C viruses in a large cohort of hemophilic males. Transfusion. 2001;41:338–43.
  • Soucie JM, McAlister S, McClellan A, Oakley M, Su Y. The universal data collection surveillance system for rare bleeding disorders. Am J Prev Med. 2010;38(4 Suppl):S475–81.
  • CDC. Blood Safety Monitoring Among Persons with Bleeding Disorders — United States, May 1998–June 2002. MMWR Morb Mortal Wkly Rep. 2003;51:1152–4.
  • Soucie JM, Wang C, Siddiqi A, Kulkarni R, Recht M, Konkle BA, et al.. The longitudinal effect of body adiposity on joint mobility in young males with hemophilia A. Haemophilia. 2011;17(2):196–203.
  • Kempton CL, Soucie JM, Miller C, Hooper C, Escobar MA, Cohen AJ, et al.. In non-severe hemophilia A the risk of inhibitor following intensive factor treatment is greater in older patients: a case–control study. J Thromb Haemost. 2010;8:2224–31.
  • Drake JH, Soucie JM, Cutter SC, Forsberg AD, Baker JR, Riske B. High school completion rates among men with hemophilia. Am J Prev Med. 2010;38(4 Suppl):S489–94.
  • Monahan PE, Baker JR, Riske B, Soucie JM. Physical functioning in boys with hemophilia in the U.S. Am J Prev Med. 2011;43:S360–8.
  • Evatt BL. Observations from Global Survey 2001: an emerging database for progress. Haemophilia. 2002;8:153–6.
  • Evatt BL, Robillard L. Establishing haemophilia care in developing countries: using data to overcome the barrier of pessimism. Haemophilia. 2000;6:131–4.

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