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. 1993 Jan-Feb;108(1):91–98.

Quality control of birth defect registry data: a case study.

J Schulman 1, J A Hahn 1
PMCID: PMC1403336  PMID: 8434104

Abstract

The California Birth Defects Monitoring Program maintains a population-based registry of children born with congenital malformations. Trained data collectors routinely visit hospitals and genetics centers to identify cases and abstract information. These data are provided to the public health, medical, and lay communities and are used for conducting prevalence and case-control studies. A stratified sample of each data collector's work for one data year was reevaluated to assess the quality of case ascertainment and record abstraction. The sample included data from 109 facilities (37 percent) and 729 abstracts (5 percent). There are three steps in data collection: case-finding, the process of identifying potential cases; culling, the process of reviewing the charts of potential cases to determine which are reportable; and abstracting, the process of recording information from the charts of reportable cases. The probability that a potential case is missed during casefinding is 7 percent for small facilities, 4 percent for medium facilities, and 1 percent for large facilities. The probability that a reportable case is mistakenly classified as not reportable during culling is 3 percent for small and medium facilities and 1 percent for large facilities. The probabilities of incorrectly abstracting selected diagnoses and demographic items are slightly higher (8 percent for small and medium facilities and 6 percent for large facilities) because these are more complex processes than are casefinding and culling. Finally, the overall probability of missing a case from the registry is 3 percent. Therefore, these data indicate that the information collected by this registry are both reliable and complete.

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Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Beard C. M., Bergstralh E. J., Klee G. G. Interobserver variability in collecting data from medical records. Arch Pathol Lab Med. 1988 Jun;112(6):594–596. [PubMed] [Google Scholar]
  2. Calle E. E., Khoury M. J. Completeness of the discharge diagnoses as a measure of birth defects recorded in the hospital birth record. Am J Epidemiol. 1991 Jul 1;134(1):69–77. doi: 10.1093/oxfordjournals.aje.a115994. [DOI] [PubMed] [Google Scholar]
  3. Calzavara L. M., Coates R. A., Craib K. J., Schechter M. T., Le T. N., Nault P. L., Elmslie K. Underreporting of AIDS cases in Canada: a record linkage study. CMAJ. 1990 Jan 1;142(1):36–39. [PMC free article] [PubMed] [Google Scholar]
  4. Chiazze L., Jr Morbidity survey and case register estimates of cancer incidence. Natl Cancer Inst Monogr. 1966 Jan;19:373–384. [PubMed] [Google Scholar]
  5. Croen L. A., Shaw G. M., Jensvold N. G., Harris J. A. Birth defects monitoring in California: a resource for epidemiological research. Paediatr Perinat Epidemiol. 1991 Oct;5(4):423–427. doi: 10.1111/j.1365-3016.1991.tb00728.x. [DOI] [PubMed] [Google Scholar]
  6. Demlo L. K., Campbell P. M., Brown S. S. Reliability of information abstracted from patients' medical records. Med Care. 1978 Dec;16(12):995–1005. doi: 10.1097/00005650-197812000-00003. [DOI] [PubMed] [Google Scholar]
  7. Feigl P., Polissar L., Lane W. W., Guinee V. Reliability of basic cancer patient data. Stat Med. 1982 Jul-Sep;1(3):191–204. doi: 10.1002/sim.4780010302. [DOI] [PubMed] [Google Scholar]
  8. Goldberg J., Gelfand H. M., Levy P. S., Mullner R. An evaluation of the Illinois trauma registry: the completeness of case reporting. Med Care. 1980 May;18(5):520–531. doi: 10.1097/00005650-198005000-00005. [DOI] [PubMed] [Google Scholar]
  9. Gordis L., Lilienfeld A., Rodriguez R. An evaluation of the Maryland Rheumatic Fever Registry. Public Health Rep. 1969 Apr;84(4):333–339. [PMC free article] [PubMed] [Google Scholar]
  10. Herrmann N., Cayten C. G., Senior J., Staroscik R., Walsh S., Woll M. Interobserver and intraobserver reliability in the collection of emergency medical services data. Health Serv Res. 1980 Summer;15(2):127–143. [PMC free article] [PubMed] [Google Scholar]
  11. Lowry R. B., Thunem N. Y., Anderson-Redick S. Alberta Congenital Anomalies Surveillance System. CMAJ. 1989 Dec 1;141(11):1155–1159. [PMC free article] [PubMed] [Google Scholar]
  12. Pole D. J. Myocardial infarction incidence: methods, validity and preliminary experience of a coronary register. Med J Aust. 1972 Dec 30;2(27):1481–1484. doi: 10.5694/j.1326-5377.1972.tb92994.x. [DOI] [PubMed] [Google Scholar]
  13. Polissar L., Feigl P., Lane W. W., Glaefke G., Dahlberg S. Accuracy of basic cancer patient data: results from an extensive recoding survey. J Natl Cancer Inst. 1984 May;72(5):1007–1014. [PubMed] [Google Scholar]
  14. Rice M. J., Kaplan E. L. Rheumatic fever in Minnesota. II. Evaluation of hospitalized patients and utilization of a State Rheumatic Fever Registry. Am J Public Health. 1979 Aug;69(8):767–771. doi: 10.2105/ajph.69.8.767. [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Schnatter A. R., Acquavella J. F., Thompson F. S., Donaleski D., Thériault G. An analysis of death ascertainment and follow-up through statistics Canada's Mortality Data Base system. Can J Public Health. 1990 Jan-Feb;81(1):60–65. [PubMed] [Google Scholar]
  16. Stone D. H. A method for the validation of data in a register. Public Health. 1986 Sep;100(5):316–324. doi: 10.1016/s0033-3506(86)80054-3. [DOI] [PubMed] [Google Scholar]
  17. West R. R. Accuracy of cancer registration. Br J Prev Soc Med. 1976 Sep;30(3):187–192. doi: 10.1136/jech.30.3.187. [DOI] [PMC free article] [PubMed] [Google Scholar]
  18. Yeole B. B., Jussawalla D. J. An assessment of reliability and completeness of Bombay Cancer Registry data (1963 - 1985). Indian J Cancer. 1988 Sep;25(3):177–190. [PubMed] [Google Scholar]

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