Nembhard Wendy N, Bower Carol
Division of Birth Defects Research, Department of Pediatrics, College of Medicine, University of Arkansas for Medical Sciences, Arkansas Children's Research Institute, Little Rock, Arkansas, USA.
Telethon Kids Institute, Subiaco, Western Australia, Australia.
Birth Defects Res A Clin Mol Teratol. 2016 Nov;106(11):894-904. doi: 10.1002/bdra.23575.
The birth defects component of the Western Australian Register for Developmental Anomalies (WARDA-BD) was evaluated to assess its efficiency, effectiveness, and data quality.
WARDA-BD was evaluated using the Centers for Disease Control and Prevention Guidelines for Evaluating Public Health Surveillance Systems and Data Quality Standards from the National Birth Defects Prevention Network. The evaluation included interviews with Register staff, local community organizations, parents, clinicians, and researchers; process observation; and secondary data analyses.
WARDA-BD is a statutory, statewide, population-based surveillance system established in 1980 that monitors approximately 30,000 births annually. Identification of eligible cases is for children up to age 6 years through active and passive ascertainment methods from multiple sources including birth, death, and hospitalization data; antenatal ultrasonography; hospital unit logs; medical records; fetal medicine departments; cytogenetic laboratories; specialty clinics; and pediatric surgery and pathology departments. Defect diagnoses are verified and coded using the 5-digit British Paediatric Association extension of the International Classification of Disease, Ninth Revision system. Register staff monitor Register data for completeness and accuracy resulting in high quality data with a low percentage of missing items.
Strengths of WARDA-BD include high data quality, timeliness, representativeness, stable funding, active community engagement, and high staff retention. Its data were used in numerous epidemiologic investigations resulting in >325 peer-reviewed publications. Potential weaknesses include the limited number of variables collected and low visibility. Although WARDA-BD uses labor intensive case ascertainment and quality assurance and control processes, the Register provides accurate and essential data for stakeholders. Birth Defects Research (Part A) 106:894-904, 2016. © 2016 Wiley Periodicals, Inc.
对西澳大利亚发育异常登记册中的出生缺陷部分（WARDA - BD）进行评估，以评价其效率、效果和数据质量。
依据美国疾病控制与预防中心的《公共卫生监测系统评估指南》以及国家出生缺陷预防网络的数据质量标准对WARDA - BD进行评估。评估内容包括与登记册工作人员、当地社区组织、家长、临床医生和研究人员进行访谈；过程观察；以及二次数据分析。
WARDA - BD是一个法定的、覆盖全州的、基于人群的监测系统，于1980年建立，每年监测约30000例出生情况。通过主动和被动确定方法，从包括出生、死亡和住院数据、产前超声检查、医院科室日志、病历、胎儿医学科室、细胞遗传学实验室、专科诊所以及小儿外科和病理科等多个来源，识别6岁及以下符合条件的病例。缺陷诊断使用国际疾病分类第九版系统的5位英国儿科学会扩展编码进行核实和编码。登记册工作人员监测登记册数据的完整性和准确性，从而获得高质量数据，缺失项目的百分比很低。
WARDA - BD的优势包括数据质量高、及时性强、代表性好、资金稳定、社区积极参与以及工作人员留存率高。其数据被用于众多流行病学调查，产生了超过325篇经同行评审的出版物。潜在的弱点包括收集的变量数量有限和知名度较低。尽管WARDA - BD采用劳动密集型的病例确定以及质量保证和控制流程，但该登记册为利益相关者提供了准确且重要的数据。《出生缺陷研究（A部分）》106:894 - 904，2016年。©2016威利期刊公司。
