Completeness of registration of oral clefts in a medical birth registry:: a population-based study

Completeness of registration of oral clefts in a medical birth registry:: a population-based study
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DOI:
10.1080/08037050701645090
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发表时间:
2007-01-01
影响因子:
4.3
通讯作者:
Lie, Rolv Terje
Lie, Rolv Terje
中科院分区:
医学2区
文献类型:
--
作者:
Kubon, Christer;Sivertsen, Ase;Lie, Rolv Terje

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背景对出生缺陷的流行病学监测和研究需要准确的诊断和充分的登记。在这方面,国家出生登记处的业绩没有得到很好的描述。方法.我们将1967年至1998年期间在挪威治疗的所有3,616例唇腭裂病例的临床数据与挪威医学出生登记处的数据联系起来,并计算了报告给登记处的临床验证病例的比例,按严重程度分层。结果最完全确定的唇腭裂类型是唇腭裂(CLP),其中94%有报道。单独唇裂(83%)和单独腭裂(CPO)(57%)的确诊率较低。对于三种类型的裂,报告的完整性取决于裂的严重程度。例如,报告了71%的重度CPO病例,而仅报告了11%的轻度CPO病例。结论.确定是密切相关的裂缝类型和严重程度。由于出生缺陷的严重程度可能与其原因有关,这些登记模式对出生缺陷的监测以及病因学研究的进行具有影响。出生时未记录的腭裂病例比例很大,这表明新生儿腭裂的临床检查往往是不够的。
Background. Epidemiological surveillance and research on birth defects require accurate diagnosis and adequate registration. In this regard, the performance of national birth registries is not well described. Methods. We linked clinical data from all 3,616 cleft cases treated in Norway between 1967 and 1998 with data from the Medical Birth Registry of Norway, and calculated the proportion of clinically verified cases reported to the Registry, stratified by severity. Results. The cleft type most completely ascertained was cleft lip and palate (CLP), of which 94% were reported. Ascertainment was less complete for cleft lip alone (83% recorded), and cleft palate only (CPO) (57% recorded). For each of the three types of clefts, completeness of reporting depended on severity of the cleft. For example, 71% of cases with severe CPO were reported, while only 11% of cases with mild CPO were reported. Conclusions. Ascertainment was strongly related to cleft type and severity. To the degree that severity of birth defects may be related to their cause, these patterns of registration have implications for surveillance of birth defects as well as the conduct of etiologic studies. The large proportion of cleft palate cases unrecorded at birth suggests that clinical examination of the newborn palate is often inadequate.