Public health surveillance for hereditary hemochromatosis

被引:6
作者
Wetterhall, SF
Cogswell, ME
Kowdley, KV
机构
[1] Ctr Dis Control & Prevent, Atlanta, GA 30333 USA
[2] Univ Washington, Dept Med, Seattle, WA 98195 USA
关键词
D O I
10.7326/0003-4819-129-11_Part_2-199812011-00009
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
The recent realization that hemochromatosis is a common condition has created opportunities to develop unified public health surveillance for this disorder and its complications and to design programs to prevent unnecessary illness and death resulting from this disorder. Public health surveillance for hemochromatosis can be used to measure the magnitude of the problem (for example, to establish the number of persons with evidence of early iron overload); identify research needs; reveal the natural history of the disease; detect changes in health care practices, such as use of screening tests; and evaluate interventions, such as phlebotomy. Existing surveillance has been limited to periodic measurement of morbidity and mortality done by using hospital discharge records, health examination surveys, vital statistics, and data from small research registries. The improvement of surveillance will entail the ongoing collection of information from population-based surveys, such as the Behavioral Risk Factor Surveillance System; the collection of data on provider practices (for example, through the National Ambulatory Medical Care Survey); and the establishment of population-based registries. Creating population-based registries requires consensus on case definitions; strategies to encourage case ascertainment and reporting; policies and procedures for protecting privacy and ensuring confidentiality; and partnerships among providers, researchers, and public health officials. Longitudinal data from population-based registries will provide insight into determinants of disease expression, such as pattern or degree of iron overload. This information is critical for developing evidence-based recommendations for population screening, monitoring changes in medical practices, and assessing the effect of preventive measures.
引用
收藏
页码:980 / 986
页数:7
相关论文
共 58 条
  • [1] ADAMS PC, 1991, AM J MED, V90, P445
  • [2] Alper J S, 1994, J Public Health Policy, V15, P345, DOI 10.2307/3342910
  • [3] THE EFFECT OF UNDERREPORTING ON THE APPARENT INCIDENCE AND EPIDEMIOLOGY OF ACUTE VIRAL-HEPATITIS
    ALTER, MJ
    MARES, A
    HADLER, SC
    MAYNARD, JE
    [J]. AMERICAN JOURNAL OF EPIDEMIOLOGY, 1987, 125 (01) : 133 - 139
  • [4] UNDERREPORTING OF DIABETES ON DEATH CERTIFICATES, KING COUNTY, WASHINGTON
    ANDRESEN, EM
    LEE, JAH
    PECORARO, RE
    KOEPSELL, TD
    HALLSTROM, AP
    SISCOVICK, DS
    [J]. AMERICAN JOURNAL OF PUBLIC HEALTH, 1993, 83 (07) : 1021 - 1024
  • [5] [Anonymous], PUBLIC HLTH CONSEQUE
  • [6] AUSTIN D, 1983, REV CANC RES, V2, P119
  • [7] BRADBEAR RA, 1985, J NATL CANCER I, V75, P81
  • [8] Bradley L A, 1996, J Med Screen, V3, P178
  • [9] MEDICAID DATA AS A RESOURCE FOR EPIDEMIOLOGIC STUDIES - STRENGTHS AND LIMITATIONS
    BRIGHT, RA
    AVORN, J
    EVERITT, DE
    [J]. JOURNAL OF CLINICAL EPIDEMIOLOGY, 1989, 42 (10) : 937 - 945
  • [10] Hereditary hemochromatosis - Gene discovery and its implications for population-based screening
    Burke, W
    Thomson, E
    Khoury, MJ
    McDonnell, SM
    Press, N
    Adams, PC
    Barton, JC
    Beutler, E
    Brittenham, G
    Buchanan, A
    Clayton, EW
    Cogswell, ME
    Meslin, EM
    Motulsky, AG
    Powell, LW
    Sigal, E
    Wilfond, BS
    Collins, FS
    [J]. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 1998, 280 (02): : 172 - 178