Estonian

The Estonian Biobank

The Estonian Biobank (EBB) is a population-based biobank of the Estonian Genome Center at the University of Tartu (EGCUT. Its cohort size is currently close to 200,000 participants (“gene donors” ≥ 18 years of age), which closely reflects the age, sex and geographical distribution of the Estonian population. Estonians represent 83%, Russians 14%, and other nationalities 3% of all participants. Genomic GWAS analyses have been performed on all gene donors, and RNA samples from 2,100 individuals are available for gene expression studies, along with 45 biomarkers from serum and plasma.

Key facts

Number of individuals:Total 200,000
Biobank confirmed willingness to provide samples/data for EIT Health studies:Yes
Contact person(s) and contact data (e-mail address, tel. no) for access purposes:andres.metspalu@ut.ee, +372 5063088 and +372 7375029 (personal assistant Mrs. Krista Liiv),
Head of the EBB laboratory: Steven Smit (MSc) – +372 58557900 (steven.smit@ut.ee)
Number of samples:– 200,000 DNA
– 200,000 Plasma
Sample type:DNA, Plasma, WBC
Omics data available:LWGS – 3,000
WES –2,500
Metabolomics NMR (120 molecules) –11,000
Illumina GS Aarray –all gene donors, currently 150,000
Clinical biochemistry (42 analysis) –2,700
Telomere length –5,200
mRNA seq. –600
Genome wide methylation arrays –700
Genome wide gene expression arrays –1,100
Website:The Estonian Biobank (EBB)

 

General information

Type of biobank:Population based biobank, longitudinal with periodic updates from the e-Health databases(EMR), incl. ICD-10 codes, from National Health Insurance Fund, prescription data, laboratory data, infraction registry, cancer registry data, causes of death registry, Regional Hospital databases, research projects, National registries and databases for enrichment of phenotype data in the Estonian Biobank.
If longitudinal the frequency:Yes, longitudinal, the target is to get yearly updates, but so far it has been less frequent 1-3 years.
Link to central portal to seek samples and data:Central portal www.biobank.ee. To seek samples and data researchers have to submit a written request. 
Broad consent:Yes – link to information.
Option to recall donors:Yes, following ethics committee approval.
Option to recall family members:Yes, following ethics committee approval.

Biobank access procedure:

Access is described in great detail on our website together with the document forms applicant has to fill in: www.biobank.ee But in short: Data access.

Major terms for access:Release of the biological material and data from the Estonian Biobank, Institute of Genomics (IG), University of Tartu (EGCUT). The pseudo-anonymous data of the gene donors are available for research & developmental projects.The data release is conducted in accordance with the regulations of the Human Genes Research Act. The Estonian Biobank, IG, University of Tartu releases:
a) State of the health data; lifestyle, demographic, and genetic data
b) Biological materials: DNA, plasma and data.(Application form for data release) in order to request a release of the biological materials and data of the gene donors for research. Before an application can be accepted for review, the research project has to obtain an approval from the Ethics Review Committee on Human Research of the Ministry of Social Affairs. To obtain an approval for the project application (completed application form with the permission from the Ethics Committee), the director of the IG submits the application for evaluation to the scientific committee. If the application is approved, the IG will sign a contract with the applicant. The applicant will reimburse the costs of material release, regardless of whether the data are issued forscientific or commercial purposes. During the transfer of the health data and/or biological material, a data release form will be signed.
a) The applicant will be asked to submit the results of the research project that were obtained using the data of the gene donors, to the Estonian Biobank by the time specified in the contract. These results will complement the Estonian Biobank database.
Ethical and legal compliance:All projects have to get the ethics committee approval.
Speed and reliability of delivery:Delivery depends on 3 factors: the quality of the initial proposal, 2 weeks for the science committee in

a) the IG, up to 2 months for the ethical committee, 1 month for the permission from the University of Tartu

b) Senat to send biological material outside of the country

An application has to be submitted to the Estonian Biobank, IG, University of Tartu.

Quality management system:

Operational procedure:ISO 9001/2008
Storage:DNA and plasma from first 52000 gene donors are in liquid N2 (14 aliquots per individual). For the next 150 000 samples DNA is in -20C, plasma is in -800C. All DNAs are kept in the Hamilton ASM System at -200C.
Compliance with international standards:ISO 9000-2015.
Current ISO certificates:ISO 9001/2008. In progress: ISO 20387

Data:

Clinical data linked to samples:ICD-10 codes from the Central Insurance Fund and other databases. Disease trajectories for all gene donors. EMR, laboratory data, prescription data and hospital discharge documents.
Data standards:Not available.
Data security rules:Not available.

Biobank related service:

Research support, what type of expertise?:Bioinformatics, biostatistics, biobanking legal requirements, funding, setup and running, GWA Studies, metabolomics, microbiome, pharmacogenomics, human genomics, epigenetics, eQTL, DNA structural variation and common, complex disease, polygenic risk scores.
Core facility services; what type? Link?:Genotyping, sequencing DNA & RNA incl. Sanger sequence and NGS, bioinformatics and biostatistics.
Queries from national health registers:Regular queries from national health databases and registries.
Links to the model contract and MTA:There is no standard MTA, all cases are different.

IP:

IP rules, what is negotiable?:University of Tartu will keep the rights, scientists are inventors.
Requirements to study results (access etc.):All study results, which could enrich the Estonian Biobank will be returned to the biobank when the study is over.
Participant’s right to the information:Participants have right to know what information the Estonian Biobank has on them and they have right to be counselled. However, the information they get is research information, not medical information. Over 2000 people have asked for it and received counselling up to 30 min) and relevant data. (Leitsalu et al., 2019 (in preparation).
Number of access contracts with industry:Up to June 2019 EGC had 14 contacts with industrial partners.

 

The "Registers and Biobanks in Transition” strategic initiative is funded by EIT Health