Validation of the Dutch Registry of Common Oral Clefts: Quality of Recording Specific Oral Cleft Features
Objective Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system. This study validates data on the topographic-anatomical structure, morphology, and side of individual anomalies of the primary palate and se...
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Published in | The Cleft palate-craniofacial journal Vol. 49; no. 5; pp. 609 - 617 |
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Main Authors | , , , , , |
Format | Journal Article |
Language | English |
Published |
Los Angeles, CA
SAGE Publications
01.09.2012
American Cleft Palate-Craniofacial Association SAGE PUBLICATIONS, INC |
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Abstract | Objective
Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system. This study validates data on the topographic-anatomical structure, morphology, and side of individual anomalies of the primary palate and secondary palate that form the oral cleft.
Design
Validation study.
Setting
All 15 Dutch cleft palate teams reporting presurgery oral cleft patients to the national registry.
Patients
A random sample of 250 cases registered in the national database with oral clefts from 1997 through 2003; of these, 13 cases were excluded.
Main Outcome Measures
By linking registry data with clinical data, we identified differential recording rates by comparing the prevalence, and we measured the degree of agreement by computing validity and reliability statistics.
Results
The topographic-anatomical structures (lip, alveolus, and hard and soft palates) of the anomalies had near-perfect interdatabase agreement with a sensitivity of 88% to 99%. However, when analyzing the individual anomalies in detail (morphology and side), validity decreased and depended on morphological severity. This association was most evident for anomalies of the secondary palate. For example, sensitivity was higher for “complete cleft hard palate” (92%) than for “submucous cleft hard/soft palate” (69%).
Conclusions
Overall, the validity of Dutch registry data on oral clefts is good, supporting the feasibility of this unique recording system. However, when analyzing oral cleft data in detail, the quality appears to be related to anatomical location and morphological severity. This might have implications for etiologic research based on registry data and for guidelines on neonatal examination. |
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AbstractList | Objective
Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system. This study validates data on the topographic-anatomical structure, morphology, and side of individual anomalies of the primary palate and secondary palate that form the oral cleft.
Design
Validation study.
Setting
All 15 Dutch cleft palate teams reporting presurgery oral cleft patients to the national registry.
Patients
A random sample of 250 cases registered in the national database with oral clefts from 1997 through 2003; of these, 13 cases were excluded.
Main Outcome Measures
By linking registry data with clinical data, we identified differential recording rates by comparing the prevalence, and we measured the degree of agreement by computing validity and reliability statistics.
Results
The topographic-anatomical structures (lip, alveolus, and hard and soft palates) of the anomalies had near-perfect interdatabase agreement with a sensitivity of 88% to 99%. However, when analyzing the individual anomalies in detail (morphology and side), validity decreased and depended on morphological severity. This association was most evident for anomalies of the secondary palate. For example, sensitivity was higher for “complete cleft hard palate” (92%) than for “submucous cleft hard/soft palate” (69%).
Conclusions
Overall, the validity of Dutch registry data on oral clefts is good, supporting the feasibility of this unique recording system. However, when analyzing oral cleft data in detail, the quality appears to be related to anatomical location and morphological severity. This might have implications for etiologic research based on registry data and for guidelines on neonatal examination. Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system. This study validates data on the topographic-anatomical structure, morphology, and side of individual anomalies of the primary palate and secondary palate that form the oral cleft. Validation study. All 15 Dutch cleft palate teams reporting presurgery oral cleft patients to the national registry. A random sample of 250 cases registered in the national database with oral clefts from 1997 through 2003; of these, 13 cases were excluded. By linking registry data with clinical data, we identified differential recording rates by comparing the prevalence, and we measured the degree of agreement by computing validity and reliability statistics. The topographic-anatomical structures (lip, alveolus, and hard and soft palates) of the anomalies had near-perfect interdatabase agreement with a sensitivity of 88% to 99%. However, when analyzing the individual anomalies in detail (morphology and side), validity decreased and depended on morphological severity. This association was most evident for anomalies of the secondary palate. For example, sensitivity was higher for "complete cleft hard palate" (92%) than for "submucous cleft hard/soft palate" (69%). Overall, the validity of Dutch registry data on oral clefts is good, supporting the feasibility of this unique recording system. However, when analyzing oral cleft data in detail, the quality appears to be related to anatomical location and morphological severity. This might have implications for etiologic research based on registry data and for guidelines on neonatal examination. Objective Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system. This study validates data on the topographic-anatomical structure, morphology, and side of individual anomalies of the primary palate and secondary palate that form the oral cleft. Design Validation study. Setting All 15 Dutch cleft palate teams reporting presurgery oral cleft patients to the national registry. Patients A random sample of 250 cases registered in the national database with oral clefts from 1997 through 2003; of these, 13 cases were excluded. Main Outcome Measures By linking registry data with clinical data, we identified differential recording rates by comparing the prevalence, and we measured the degree of agreement by computing validity and reliability statistics. Results The topographic-anatomical structures (lip, alveolus, and hard and soft palates) of the anomalies had near-perfect interdatabase agreement with a sensitivity of 88% to 99%. However, when analyzing the individual anomalies in detail (morphology and side), validity decreased and depended on morphological severity. This association was most evident for anomalies of the secondary palate. For example, sensitivity was higher for “complete cleft hard palate” (92%) than for “submucous cleft hard/soft palate” (69%). Conclusions Overall, the validity of Dutch registry data on oral clefts is good, supporting the feasibility of this unique recording system. However, when analyzing oral cleft data in detail, the quality appears to be related to anatomical location and morphological severity. This might have implications for etiologic research based on registry data and for guidelines on neonatal examination. OBJECTIVESince 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system. This study validates data on the topographic-anatomical structure, morphology, and side of individual anomalies of the primary palate and secondary palate that form the oral cleft.DESIGNValidation study.SETTINGAll 15 Dutch cleft palate teams reporting presurgery oral cleft patients to the national registry.PATIENTSA random sample of 250 cases registered in the national database with oral clefts from 1997 through 2003; of these, 13 cases were excluded.MAIN OUTCOME MEASURESBy linking registry data with clinical data, we identified differential recording rates by comparing the prevalence, and we measured the degree of agreement by computing validity and reliability statistics.RESULTSThe topographic-anatomical structures (lip, alveolus, and hard and soft palates) of the anomalies had near-perfect interdatabase agreement with a sensitivity of 88% to 99%. However, when analyzing the individual anomalies in detail (morphology and side), validity decreased and depended on morphological severity. This association was most evident for anomalies of the secondary palate. For example, sensitivity was higher for "complete cleft hard palate" (92%) than for "submucous cleft hard/soft palate" (69%).CONCLUSIONSOverall, the validity of Dutch registry data on oral clefts is good, supporting the feasibility of this unique recording system. However, when analyzing oral cleft data in detail, the quality appears to be related to anatomical location and morphological severity. This might have implications for etiologic research based on registry data and for guidelines on neonatal examination. |
Author | Mohangoo, Ashna D. Ongkosuwito, Edwin M. Vermeij-Keers, Christl Rozendaal, Anna M. De Vries, Esther Luijsterburg, Antonius J.M. |
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Cites_doi | 10.1136/bmj.38300.665301.3A 10.1597/08-279 10.2307/2529310 10.1016/S0140-6736(09)60695-4 10.1016/S0895-4356(99)00188-2 10.1097/01.mlr.0000132391.59713.0d 10.1136/bmj.327.7417.716 10.1016/0895-4356(90)90158-L 10.7326/0003-4819-140-3-200402030-00010 10.1136/fn.86.3.F210 10.1597/08-150 10.1093/ortho.27.4.319 10.1111/j.1753-4887.2006.tb00211.x 10.1080/00016340902934696 10.1080/08037050701645090 10.1136/adc.2005.077958 |
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Keywords | cleft lip registry cleft palate validation Cleft palate Cleft lip Malformation Stomatology Quality Oral administration Oral cavity disease Congenital cleft Recording Congenital disease |
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Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system.... Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system. This... Objective Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system.... Objective : Since 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording... OBJECTIVESince 1997, common oral clefts in the Netherlands have been recorded in the national oral cleft registry using a unique descriptive recording system.... |
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SubjectTerms | Archives & records Biological and medical sciences Cleft Lip - epidemiology Cleft Palate - epidemiology Deformities Dentistry Facial bones, jaws, teeth, parodontium: diseases, semeiology Humans Maxillofacial surgery Medical sciences Mouth Netherlands - epidemiology Non tumoral diseases Otorhinolaryngology. Stomatology Registries |
Title | Validation of the Dutch Registry of Common Oral Clefts: Quality of Recording Specific Oral Cleft Features |
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