Validation Studies From the Western Australian Congenital Malformations Registry

Abstract

A series of studies was undertaken in 1989 to validate the data held by the Western Australian Congenital Malformations Registry. Comparison with hospital discharge data identified 1585 children six years of age or younger with malformations discharged from hospitals in Westem Australia in 1986.226 of whom were not already recorded on the Congenital Malformations Register. When the records of a special register for cleft lip and palate were examined, all cases of facial cleft known to the special register were also recorded on the Malformations Register.

Long‐term survival for infants born with orofacial clefts in Western Australia

“…Our study, using linked data from 1980, and with OFC status defined using a population‐based congenital anomaly register with active surveillance, enabled us to compare survival rates between those born with OFC and those without. Completeness of registrations of individuals with OFC is estimated to be 100% (Bower et al, ) and with diagnoses up to 6 years of age, children with all OFC types were included. The quality of our data is high with linkage proportions >99% (Holman et al, ).…”

School performance for children with cleft lip and palate: a population‐based study

“…Completeness of registrations of individuals with OFC is estimated to be 100%(Bower et al . ) and with diagnoses up to 6 years of age, children with all cleft types were included. Linked data from the WA Data Linkage System have been validated and used extensively for health research and linkage proportions are >99%.…”

Hospitalisations up to adulthood for children born with orofacial clefts

“…Our study covering 25 years, using linked data from 1980, and with OFC status defined using a population‐based congenital anomaly register with active surveillance, enabled comparisons in all admissions between those born with OFC, and those without. Completeness of registrations of individuals with OFC is estimated to be 100% and with diagnoses up to 6 years of age, children with all cleft types were included. The quality of our data is high with linkage proportions >99% …”