Abstract
ENGLISH SUMMARYOlsen J. National registration in human reproduction and research oriented ad hoc data. Nor JEpidemiol 2017; 27 (1-2): 27-31.The Nordic countries have a long tradition for collecting and storing of data in reproductive health. Theseregisters cover the entire population and focus on health outcomes. They have gradually been made availablefor research and if supplemented with data on potential risk factors in reproductive health, they providea strong basis for research in potential causes of disease in the reproductive system. Several pregnany/birthcohorts have been successful in providing important information in preventive medicine. The most importantof these are the Norwegian birth cohort (MoBa) and the Danish National Birth Cohort (DNBC). Bothinclude about 100,000 newborns. They are based on the rationale that many diseases have causes that startoperating in fetal life – fetal programming of diseases – even diseases that manifest themselves later in life(adult diseases). Examples of historic and more recent findings are presented in the following text.Risk of disclosure of personal data is of concern. We have not had examples of such unwanted disclosureand we want to keep this achievement. We clearly have to do many things different and better in the future.Fortunately, technical solutions are available and promising.The registers and the ad hoc data sources have given the Nordic epidemiologists a leading position inreproductive health. To keep that position, we need to plan new cohorts and train more people. If we do thatwe will be able to continue our collaboration with colleagues all over the world.
Highlights
Risk of disclosure of personal data is of concern
If we do that we will be able to continue our collaboration with colleagues all over the world
De fleste oplysninger vedrører sygelighed og i mindre grad prædiktorer for sygdom
Summary
For at få et bedre udbytte af helbredsdata til gavn for sygdomsforebyggelsen i befolkningen blev det tiltagende klart, at der skulle indsamles data i større skala om mulige årsager til sygdomme. Dels havde der været flere mindre graviditets-/fødselskohorter i alle de nordiske lande, og der var ”The National Collaborative Perinatal Study” fra 1950erne – dataindsamling startede i 1958 [1]. J. OLSEN loger, der kunne analysere store datamængder på kort tid og de nationale statistiske bureauer blev mere villige til at åbne deres registre for forskningsmæssige formål, hvilket var af stor betydning for vore muligheder for at forbedre især den forebyggende medicin. I Danmark havde man en større 10-årig bevilling fra Grundforskningsfonden i ryggen og i Norge var Folkehelseinstituttet den vigtigste økonomiske støtte, men der kom også midler fra NIH, NIEH og andre fonde. Der skulle derfor sikres en langsigtet strategi for administration, økonomisk styring og datasikkerhed
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