Regional underreporting of associated congenital anomalies in cleft patients in the Netherlands.
OBJECTIVE
The Dutch Cleft Palate Association (DCPA) registers all patients with cleft lip or palate and associated congenital anomalies in the Netherlands. The aim of this study was to assess if early registration of cleft patients leads to underreporting of associated congenital anomalies and, if so, whether reregistration is necessary.


METHODS
The DCPA registration of the birth cohort 1997 to 2001 was compared with the medical files of these cleft patients for prevalence, type, and moment of registration of associated congenital anomalies. To assess possible long-term underregistration, a second birth cohort of 1990 to 1991 was analyzed.


RESULTS
The percentage of cleft patients with associated congenital anomalies was 26% in the DCPA database and 33% in the retrospective medical file review. A syndrome, sequence, or association was recognized in 8% of the cleft patients by the DCPA compared with 13% in our medical file review. Of all associated congenital anomalies diagnosed during a follow-up of 12 years, 53% were diagnosed in the first year of life. The cumulative percentage was 59% after 2 years, 62% after 3 years, 80% after 6 years, and 97% after 10 years.


CONCLUSIONS
Early registration of cleft patients leads to underreporting of other associated anomalies. For a complete registration of associated congenital anomalies in cleft patients, reregistration at a later age is necessary.
van der Veen
F J C
FJ
Department of Plastic, Reconstructive, and Hand Surgery, VU University Medical Center, NL-1007 MB Amsterdam, The Netherlands.
van Hagen
J M
JM
Berkhof
J
J
Don Griot
J P W
JP
D000367:Age Factors; D002971:Cleft Lip / Q000453:epidemiology*; D002972:Cleft Palate / Q000453:epidemiology*; D015331:Cohort Studies; D000013:Congenital Abnormalities / Q000145:classification / Q000453:epidemiology*; D019992:Databases as Topic; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D009426:Netherlands / Q000453:epidemiology; D015995:Prevalence; D012042:Registries; D012189:Retrospective Studies; D013577:Syndrome