Levendefødte i Norge 1967-76 med diagnosen Down syndrom – en registerstudie,

Abstract

The purpose of the present study was to investigate reliability and validity of the diagnoses of Down syndrome in the Medical Birth Registry of Norway (MBRN). In addition we wanted to perform a follow-up of persons who most likely had Down syndrome with respect to survival, education, participation in the labor force and income. The material comprises all live born registered in MBRN during the years 1967-76, a total of 626 928 infants. Diagnoses of Down syndrome in MBRN (N=593) were collated with diagnoses in the benefit registries of the National Insurance Administration (NAV) (N=574). Additional information for the follow-up was provided by matching with a number of national registries: Central Population Register (survival, immigration), Education register of Statistics Norway, NAV’s Register of annual income and Norwegian Armed Forces personnel data base (conscription, military service). Using two sources of the diagnoses of Down syndrome still left considerable uncertainty in estimating the prevalence of the condition. About 72 per cent of the cases were registered in MBRN. In the follow-up Down syndrome cases were found to have an especially high mortality during the first years of life. Their educational achievement was less. Even with especially adapted education, which most of the Down syndrome cases had received, they failed to become economically active to any appreciable extent. Most of them received disability pension before they were 30 years. The few who did not are interesting and their situation should be further explored.