Personnummeret – brug i epidemiologisk forskning Elsebeth Lynge Københavns Universitet København 12 November 2009.

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1 Personnummeret – brug i epidemiologisk forskning Elsebeth Lynge Københavns Universitet København 12 November 2009

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3 DEN STORE DANSKE Gyldendals åbne encyklopædi Danmark fødte og døde 1735-1993

4 PERSONNUMMERET 1947 Sverige 1964 Norge 1967 Finland 1968 Danmark

5 Population register CensusDeath register Personal identification number

6 DØDELIGHED OG ERHVERV MÆND

7 OCCUPATIONAL CANCER Denmark, Finland, Iceland, Norway, Sweden 385,000,000 risk-years 15,000,000 persons 2,800,000 cases

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9 HYPOTESIS: Mammography screening reduces breast cancer mortality DESIGN: Screening region change in breast cancer mortality controlled for change in non-screening regions DATA: Population Register Mammography screening register Cause of death register RESULT: Screening gave 25% reduction in Breast cancer mortality, RR 0.75 (95% CI 0.63-0.89) Olsen et al, 2005 ?

10 ? HYPOTHESIS: Hormones  Breast cancer Placenta weight  Hormones DESIGN: Placenta weight  Breast cancer DATA: Swedish Birth Register Swedish Cancer Register Swedish Cause of Death Register Swedish Population Register RESULT: Placenta weight 2 x >700g gave double risk of breast cancer (baseline placenta weight 2 x <500g) Cnattingius et al, 2005

11 FUTURE DANISH HEALTH DATA NETWORK National Strategy for Digitalisation of the Danish Healthcare Service, 2008

12 HYPOTHESIS: Intra-uterine exposure to viruses is associated with later risk of schizofrenia DATA: Central Population Register Danish Psychiatric Case Register PKU Data Bank DESIGN: Immunoglobulin G (IgG) antibodies to Tg from neonatal heal stick blood samples stored on filter paper RESULT: Maternal Tg infection and schizofrenia in offspring, RR 1.79 (95%CI 1.01-3.15) Mortensen et al, 2007 ?

13 NORWEGIAN WOMEN AND CANCER POSTGENOME COHORT STUDY DESIGN Dumeaux et al, 2008

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15 15 millioner biologiske prøver Danmark får national biobank i verdensklasse En forskningsbevilling til Statens Serum Institut på 121 mio. kr. fra Videnskabsministeriet og Novo Nordisk Fonden skal styrke dansk sundhedsforskning. Initiativet er til gavn for forskning i sygdommes årsager, deres forebyggelse og behandling. – Med etableringen af en national biobank vil Danmark på endnu et forskningsområde lægge sig helt i front, siger videnskabsminister Helge Sander. 24. februar 2009

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17 Don’t throw out the baby with the bathwater Update, accuracy and completeness of traditional registers Secure and non-bureaucratic access

18 Privatization and registration ”At present private hospitals provide 2% of health services. For me it is not decisive whether this percentage remains at 2% or it increases to 10, 20 or maybe 50%” Jakob Axel Nielsen Danish Minister of Health 10 Oct 2008:

19 Men selv nordiske lande kan have problemer - Eksempel fra Norge

20 TAK FOR OPMÆRKSOMHEDEN University of Copenhagen, Kommunehospitalet