Comparison between research data and routinely collected register data for studying childhood health.

Cohort studies are usually based on detailed information gathered on a limited number of individuals. Increasing collection of administrative registers offers an alternative method to gather health data. In the first study health information from birth until the age of seven years on 8708 children born in the two most northern provinces of Finland in 1985-86 was gathered through questionnaires, medical record reviews, medical examinations and some register data. In the second study, similar information on 8222 children born in the same provinces in 1987 was gathered using administrative registers. Both data collection methods gave equal results for mortality, long-term medication. and cumulative incidence of diabetes and intellectual disabilities. The register data identified more children with delayed development, but less children with long-term illness (77% of the level identified by the research data), with asthma (74%), and with epilepsy (40%). The register data was unsuitable for investigating hearing and vision disorders. The administrative data gave a gender ratio similar to that of the research data for two of the variables with poor coverage (asthma and epilepsy), but identified more boys with long-term illness in general than the research data. Administrative registers are useful for studying many long-term health problems, e.g. those resulting in hospital care or social benefits or those registered in vital statistics. Specific cohort studies with separate data collection is still needed to study for example outpatient care, self-assessed health, growth and development.