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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.


Related in: MedlinePlus

Timeline of the data collection procedures. The timeline showing the recruitment period, re-contacting projects, and frequency and timing of linking with registries and databases. Recruitment—Baseline data collection at the recruitment visit; Re-contacting—2nd timepoint data collection in re-contacting projects; Pop. Reg.—Population Register; Death Reg.—Estonian Causes of Death Registry; ENHIS—Estonian National Health Information System; HIF—Estonian Health Insurance Fund; Cancer Reg.—Estonian Cancer Registry; Tub. Reg.—Estonian Tuberculosis Registry; University Hospital—Database of the Tartu University Hospital; North Estonia Medical Center—Database of the North Estonia Medical Centre; MI Reg.—Myocardial Infarction Registry.
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jpm-05-00096-f001: Timeline of the data collection procedures. The timeline showing the recruitment period, re-contacting projects, and frequency and timing of linking with registries and databases. Recruitment—Baseline data collection at the recruitment visit; Re-contacting—2nd timepoint data collection in re-contacting projects; Pop. Reg.—Population Register; Death Reg.—Estonian Causes of Death Registry; ENHIS—Estonian National Health Information System; HIF—Estonian Health Insurance Fund; Cancer Reg.—Estonian Cancer Registry; Tub. Reg.—Estonian Tuberculosis Registry; University Hospital—Database of the Tartu University Hospital; North Estonia Medical Center—Database of the North Estonia Medical Centre; MI Reg.—Myocardial Infarction Registry.

Mentions: At recruitment, a thorough computer-assisted questionnaire consisting of approximately 330 questions and over 1000 data fields was filled out by the recruiter (Figure 1) [4]. It contained questions of a personal and demographic nature as well as questions about genealogy, health behavior, chronotype and diseases. The fact that the recruitment of participants was carried out by medical professionals ensured the reliability of anthropometric measurements and also meant that when documenting the medical history and medication use, official health records could be used, in addition to the information reported by the participant. For the purpose of validation, the source of the information was recorded (self-reported or supported by medical records).


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)

Timeline of the data collection procedures. The timeline showing the recruitment period, re-contacting projects, and frequency and timing of linking with registries and databases. Recruitment—Baseline data collection at the recruitment visit; Re-contacting—2nd timepoint data collection in re-contacting projects; Pop. Reg.—Population Register; Death Reg.—Estonian Causes of Death Registry; ENHIS—Estonian National Health Information System; HIF—Estonian Health Insurance Fund; Cancer Reg.—Estonian Cancer Registry; Tub. Reg.—Estonian Tuberculosis Registry; University Hospital—Database of the Tartu University Hospital; North Estonia Medical Center—Database of the North Estonia Medical Centre; MI Reg.—Myocardial Infarction Registry.
© Copyright Policy
Related In: Results  -  Collection

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

jpm-05-00096-f001: Timeline of the data collection procedures. The timeline showing the recruitment period, re-contacting projects, and frequency and timing of linking with registries and databases. Recruitment—Baseline data collection at the recruitment visit; Re-contacting—2nd timepoint data collection in re-contacting projects; Pop. Reg.—Population Register; Death Reg.—Estonian Causes of Death Registry; ENHIS—Estonian National Health Information System; HIF—Estonian Health Insurance Fund; Cancer Reg.—Estonian Cancer Registry; Tub. Reg.—Estonian Tuberculosis Registry; University Hospital—Database of the Tartu University Hospital; North Estonia Medical Center—Database of the North Estonia Medical Centre; MI Reg.—Myocardial Infarction Registry.
Mentions: At recruitment, a thorough computer-assisted questionnaire consisting of approximately 330 questions and over 1000 data fields was filled out by the recruiter (Figure 1) [4]. It contained questions of a personal and demographic nature as well as questions about genealogy, health behavior, chronotype and diseases. The fact that the recruitment of participants was carried out by medical professionals ensured the reliability of anthropometric measurements and also meant that when documenting the medical history and medication use, official health records could be used, in addition to the information reported by the participant. For the purpose of validation, the source of the information was recorded (self-reported or supported by medical records).

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.


Related in: MedlinePlus