Wetterhall S F, Cogswell M E, Kowdley K V
Centers for Disease Control and Prevention, Atlanta, Georgia 30333, USA.
Ann Intern Med. 1998 Dec 1;129(11):980-6. doi: 10.7326/0003-4819-129-11_part_2-199812011-00009.
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.
最近认识到血色素沉着症是一种常见病症，这为针对该病症及其并发症开展统一的公共卫生监测以及设计预防因该病症导致的不必要疾病和死亡的项目创造了机会。血色素沉着症的公共卫生监测可用于衡量问题的严重程度（例如，确定有早期铁过载证据的人数）；确定研究需求；揭示疾病的自然史；发现医疗保健实践中的变化，如筛查测试的使用情况；以及评估干预措施，如放血疗法。现有的监测仅限于通过医院出院记录、健康检查调查、人口动态统计以及小型研究登记处的数据定期测量发病率和死亡率。监测的改进将需要持续从基于人群的调查中收集信息，如行为危险因素监测系统；收集关于医疗服务提供者实践的数据（例如，通过国家门诊医疗调查）；以及建立基于人群的登记处。创建基于人群的登记处需要就病例定义达成共识；鼓励病例确诊和报告的策略；保护隐私和确保保密的政策与程序；以及医疗服务提供者、研究人员和公共卫生官员之间的合作关系。基于人群的登记处的纵向数据将有助于深入了解疾病表现的决定因素，如铁过载的模式或程度。这些信息对于制定基于证据的人群筛查建议、监测医疗实践的变化以及评估预防措施的效果至关重要。
