Utility of Capture-Recapture Methodology to Assess Completeness of Amyotrophic Lateral Sclerosis Case Ascertainment
Utility of Capture-Recapture Methodology to Assess Completeness of Amyotrophic Lateral Sclerosis Case Ascertainment
复制标题
使用捕获-再捕获方法来评估肌萎缩侧索硬化症病例确定的完整性
作者：
Michael Wittie;Lorene M. Nelson;S. Usher;K. Ward;M. Benatar
背景资料：随着美国国家肌萎缩侧索硬化症（ALS）登记处的建立，需要确定病例确定的完整性的方法，特别是考虑到主要依赖现有数据来源的建议。研究方法：从2001年到2005年，居住在5个县的亚特兰大大都市区（格鲁吉亚内）的ALS患者的数据根据其来源进行分类- ALS协会，临床（埃默里医疗保健，社区神经学家，退伍军人健康管理局，退伍军人福利管理局），医疗保险和死亡证明。ALS诊断使用图表审查进行验证。使用对数线性模型进行捕获-再捕获分析，按年龄和种族分层。结果如下：最终模型（基于798例病例）包括4个主要来源和3个双向相互作用项，估计总人群为880例（95% CI 816-965），表明病例发现方法的组合识别了约90.7%的病例。估计的5年患病率为38.5/100，000（95% CI 35.66-42.19）。结论：这项研究强调了基于现有数据来源的数据差距，并说明了一种结合多个来源数据的方法，以帮助成功建立美国国家ALS登记处。
Background: With the establishment of a national amyotrophic lateral sclerosis (ALS) registry in the United States, methods are needed to ascertain the completeness of case ascertainment, especially in view of the proposal to rely largely on existing data sources. Methods: Data about ALS patients residing in the 5-county metropolitan Atlanta area (within the State of Georgia) from 2001 to 2005 were categorized according to their source – ALS Association, clinical (Emory Healthcare, community neurologist, Veterans Health Administration, Veterans Benefits Administration), Medicare and death certificates. ALS diagnoses were verified using chart review. Capture-recapture analyses were carried out using log-linear modeling, stratified by age and race. Results: The final model (based on 798 cases), which included the 4 main sources and 3 two-way interaction terms, yielded an estimated total population of 880 (95% CI 816–965), indicating that the combination of case-finding methods identified about 90.7% of cases. The estimated 5-year period prevalence is 38.5/100,000 (95% CI 35.66–42.19). Conclusion: This study highlights gaps in data based on existing data sources and illustrates a method for combining data from multiple sources to help facilitate the successful establishment of a US national ALS registry.