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J. Pers. Med. 2015, 5(2), 96-106; doi:10.3390/jpm5020096

Linking a Population Biobank with National Health Registries—The Estonian Experience

1
Estonian Genome Center, University of Tartu, Riia 23b, Tartu 51010, Estonia
2
Institute of Molecular and Cell Biology, University of Tartu, Riia 23, Tartu 51010, Estonia
3
Hansson, Leego & Partner, Turu 1, 51014 Tartu, Estonia
*
Author to whom correspondence should be addressed.
Academic Editor: Lori A. Orlando
Received: 3 February 2015 / Revised: 1 April 2015 / Accepted: 8 April 2015 / Published: 16 April 2015
(This article belongs to the Special Issue Biobanking and EHR/EMR)
View Full-Text   |   Download PDF [705 KB, uploaded 16 April 2015]   |  

Abstract

The Estonian population-based biobank, with 52,000 participants’ genetic and health data, is the largest epidemiological cohort in the Baltic region. Participants were recruited through a network of medical professionals throughout Estonia (population 1.34 million). Unique legislation as well as a broad consent form give the Estonian Genome Center, a research institute of the University of Tartu, permission to re-contact participants and to retrieve participants’ data from national registries and databases. In addition to two re-contacting projects to update the health data of participants, extensive clinical characterizations have been retrieved from national registries and hospital databases regularly since 2010. Acquiring data from electronic health records and registries has provided a means to update and enhance the database of the Genome Center in a timely manner and at low cost. The resulting database allows a wide spectrum of genomic and epidemiological research to be conducted with the aim of benefitting public health. Future plans include linking the genome center database with the national health information system through X-road and exchanging data in real time, as well as using the genetic data and the technical infrastructure available for piloting personalized medicine in Estonia. View Full-Text
Keywords: biobanking; electronic health records; personalized medicine; Estonian Biobank; re-contacting; linking; registries; databases biobanking; electronic health records; personalized medicine; Estonian Biobank; re-contacting; linking; registries; databases
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. (CC BY 4.0).

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MDPI and ACS Style

Leitsalu, L.; Alavere, H.; Tammesoo, M.-L.; Leego, E.; Metspalu, A. Linking a Population Biobank with National Health Registries—The Estonian Experience. J. Pers. Med. 2015, 5, 96-106.

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