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Linking a population biobank with national health registries-the estonian experience.

Leitsalu L, Alavere H, Tammesoo ML, Leego E, Metspalu A - J Pers Med (2015)

Bottom Line: 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.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 Article: PubMed Central - PubMed

Affiliation: Estonian Genome Center, University of Tartu, Riia 23b, Tartu 51010, Estonia. liis.leitsalu@ut.ee.

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.

No MeSH data available.


An individuals’ disease trajectory. A participant born in 1970 and recruited in 2007. Different data sources or collection methods are color coded; green—information gathered at the baseline interview, red—retrieved from Health Insurance Fund database, and blue—retrieved from the Northern Estonian Medical Center. The health status updates coded according to the ICD-10.
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jpm-05-00096-f002: An individuals’ disease trajectory. A participant born in 1970 and recruited in 2007. Different data sources or collection methods are color coded; green—information gathered at the baseline interview, red—retrieved from Health Insurance Fund database, and blue—retrieved from the Northern Estonian Medical Center. The health status updates coded according to the ICD-10.

Mentions: The phenotype data can periodically be updated. This results in a continually growing and up-to-date clinical characterization of the participants. Instead of just having a single time point with health history, EGCUT has longitudinal data with regularly added time points. Together with the Causes of Death Registry (as of 2014 mortality data are available for 2349 biobank participants) full disease trajectories can be studied (Figure 2).


Linking a population biobank with national health registries-the estonian experience.

Leitsalu L, Alavere H, Tammesoo ML, Leego E, Metspalu A - J Pers Med (2015)

An individuals’ disease trajectory. A participant born in 1970 and recruited in 2007. Different data sources or collection methods are color coded; green—information gathered at the baseline interview, red—retrieved from Health Insurance Fund database, and blue—retrieved from the Northern Estonian Medical Center. The health status updates coded according to the ICD-10.
© Copyright Policy
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4493489&req=5

jpm-05-00096-f002: An individuals’ disease trajectory. A participant born in 1970 and recruited in 2007. Different data sources or collection methods are color coded; green—information gathered at the baseline interview, red—retrieved from Health Insurance Fund database, and blue—retrieved from the Northern Estonian Medical Center. The health status updates coded according to the ICD-10.
Mentions: The phenotype data can periodically be updated. This results in a continually growing and up-to-date clinical characterization of the participants. Instead of just having a single time point with health history, EGCUT has longitudinal data with regularly added time points. Together with the Causes of Death Registry (as of 2014 mortality data are available for 2349 biobank participants) full disease trajectories can be studied (Figure 2).

Bottom Line: 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.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 Article: PubMed Central - PubMed

Affiliation: Estonian Genome Center, University of Tartu, Riia 23b, Tartu 51010, Estonia. liis.leitsalu@ut.ee.

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.

No MeSH data available.