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GENERAL INFORMATION

Name Decode (Icelandic Biobank)
Last update 03/18/2009

Affiliation

Principal investigator

Kari Stefansson (Dr)
Decode Genetics

Contacts

Unnur Thorsteinsdottir (Dr)
Decode Genetics
Reykjavík 101
Phone: +354 570 1900
Email: unnur.thorsteinsdottir@decode.isMail
Kari Stefansson (Dr)
Decode Genetics
Reykjavík
Phone: +354 570 1900
Email: kari.stefansson@decode.isMail

Website

Funding agency

Percentage Category
deCODE genetics public 25% public funding organizations e.g. NIH and EU
deCODE genetics own funding 75% own funding

BACKGROUND

DeCODE is a biopharmaceutical company devoted to the use of human genetics to identify the genetic causes of common diseases and the application of this information to develop new drugs and DNA-based diagnostics. The company was founded in 1996 and has assembled an unparalleled set of population resources for the study of common disease genetics coupled with a strong emphasis on informatics-based solutions. The methodology is based on complete genealogical information gathered in deCODE´s genealogy database, thorough medical records and careful re-phenotyping of subjects as well as high-throughput technology and informatics approaches.

OBJECTIVES

The objective of the study is to identify the genetic causes of common diseases.

Topics of interest

  • No Broad approach with no specific topic of interest
  • Yes Target specific topics of interest (health outcomes, health determinants, etc.)
Topics ICD-10 classificationExternal
Yes Certain infectious and parasitic diseases (A00-B99)
Yes Neoplasms (C00-D48)
Yes Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism (D50-D89)
Yes Endocrine, nutritional and metabolic diseases (E00-E90)
Yes Mental and behavioural disorders (F00-F99)
Yes Diseases of the nervous system (G00-G99)
Yes Diseases of the eye and adnexa (H00-H59)
Yes Diseases of the circulatory system (I00-I99)
Yes Diseases of the respiratory system (J00-J99)
Yes Diseases of the digestive system (K00-K93)
Yes Diseases of the skin and subcutaneous tissue (L00-L99)
Yes Diseases of the musculoskeletal system and connective tissue (M00-M99)
Yes Diseases of the genitourinary system (N00-N99)
Yes Pregnancy, childbirth and the puerperium (O00-O99)

METHODS

Legend Yes No Unknown

General design

Study design Cohort, Case-control
Type of participants Individuals
Target or final number of participants 112500
Target or final number of DNA 112500

Participant selection / Characteristics of the population

Selection criteria

Yes Country of residence Iceland
Yes Health status / clinical criteria
Yes Other criteria Icelandic nationality

Recruitment procedures

Individuals were selected for the study from patient lists from collaborating physicians in the genetic programs at deCODE. Participants were contacted with an invitation letter from the physicians in which they were asked to participate in the study. The letter was followed by a phone call from a nurse at deCODEs recruitment center. Participants then visited the recruitment center where they provided a written informed consent and had blood drawn. Each participant answered a validated questionnaire with the aid of a trained study nurse. After encryption of personal identifiers of the study participants the blood tubes, clinical and questionnaire information were sent to deCODE.

Data Sources

Yes Questionnaires to participants/respondents
Yes Direct physical measures
No Medical paper
No Electronic databases
Yes Genealogical records  
Yes Other (Clinical diagnosis obtained directly from collaborating physicians.)  

Collection procedures

Clinical information was sent electronically to deCode where it was entered into a database. Initially, questionnaires were filled out on paper and entered manually into a database. Subsequently the procedure was changed and the paper questionnaires were scanned electronically. Shortly after that a secure web interface was developed and participants could either fill out a paper questionnaire or the web based version. Both versions were identical and returned the same variables. Data from physical examinations and lab data was entered directly into a computerized interface whenever possible but a portion of the data was entered from paper to electronic format. All data was sent to deCode in electronic format.
All personal identifiers associated with blood samples, clinical information and genealogy were encrypted by the Data Protection Authority, using a third-party encryption system in which the Data Protection Authority maintains the code.

Follow up procedures

No information available

Baseline principal variables of interest

Health information

  • Yes Diseases history - ICD-10
    • Cancers-all sites
    • Neurological diseases - G00-G99
    • Enuresis - R32, F98
    • Autism - F80.2-F98.3
    • Mental and behavioral disorders
    • Arthritis - M00-M99
    • Eye diseases
    • Cardiovascular Diseases - I11.0-I98.1
    • Metabolic disorders - E70-E90
    • Female Genitourinary Tract - N70-N98
    • Pre-eclampsia - O11-O14.9
    • Immune diseases
    • Chronic Obstructive Pulmonary Disease - J44-J44.9
    • Infectious diseases
    • Sleep apnoea - G47.3
  • Yes Medication intake
  • Yes Familial disease history
  • No Early life
  • Yes Women's health
  • No Quality of life

Physical / Biochemical measures

Yes Body structure measures Yes Biochemical measures
Yes Body function measures  

Sociodemographic Characteristics

Yes Birth location No Parents birth location
Yes Ethnicity/Race Yes Gender
No Marital status Yes Date of birth

Socioeconomic Characteristics

Yes Education level No Income
No Working status  

Life habits / Behaviours

Yes Physical activity Yes Smoking / Tobacco Use
No Nutrition Yes Alcohol intake

Physical environment

No Passive smoking No Mobile phone use

Sample management

Biological samples

Yes Blood No Buccal cells
No Cord blood No Tissues
No Saliva No Urine

Biological samples format

  Fresh Frozen Dried (paper) Other Specification
Blood No Yes No No

Genome-Wide Association (GWA) analyses

  • Yes Already or currently generating GWA data. Approximate number of participants : 40 000

Accreditation/certification

  • Yes Part of an accreditation/certification program (Certified by the Icelandic Ministry of Health and the Icelandic Bioethics Commitee (01/064-afg))

GOVERNANCE

Legend Yes No

Allow access to data or samples to external researchers

No Data (questionnaire-derived, measured…)
No Biological samples

STATUS

Current status

Phase Start End
Preparation phase/Pilot 1996 1997
Recruitment / initial data collection 1998 2007
Follow-up of participants -- --
Current number of participants recruited 112500 in date of 05/01/2008
Current number of collected DNA samples 112500 in date of 05/01/2008
Participation rate 80% in date of 04/01/2008

AVAILABLE DOCUMENTS

  Document type Availability
1 General study protocol
2 Specific protocols/procedures (data collection, samples management, etc.)
3 Questionnaires unnur.thorsteinsdottir@decode.isMail
4 Physical and cognitive measures
5 DNA processing
6 IT
7 Ethics
8 Consent forms unnur.thorsteinsdottir@decode.isMail
9 Pamphlet / project description
10 Governance / ethics documentation unnur.thorsteinsdottir@decode.isMail
11 Other

DOCUMENTATION

COMMENT

DeCODE has genotyped a total of 40.000 individuals with Illuminas 370 K chip as part of several GWA genetics programs. DeCODE uses population controls in their analyses and those are selected for each disease study from among the 40.000 genotyped individuals participating in various GWA studies.


General information

Name Physical and cognitive measures
Last update 07/27/2010
Collected at phase Data collection and entry phase
Year interval 1998 to 2009
Supplementary informations The data collected at baseline is different for the various disease related questionnaire.

Contacts

Unnur Thorsteinsdottir (Dr)
Decode Genetics
Reykjavík 101
Phone: +354 570 1900
Email: unnur.thorsteinsdottir@decode.isMail

Physical and cognitive measures collected

Legend Yes No

BODY STRUCTURES

ANTHROPOMETRIC STRUCTURES

Anthropometric measures

Yes Weight (In kg, this has been collected for a majority of deCODE's studies)

Yes Height (In m, this has been collected for a majority of deCODE's studies)

Yes Standing height

Yes Body circumferences (In cm, this has been collected for a majority of deCODE's studies)

Yes Hip circumference

Body composition

Yes Bioimpedance

Yes Bone density

Yes Others body composition measures (Lean body weight, body fat mass and other relevant body fat measures.)

BODY FUNCTIONS

MENTAL FUNCTIONS

Global mental functions

Yes Intelligence

Yes Cognitive functions

Yes Other global mental functions (e.g. IQ) (Memory and skills)

Specific mental functions

Yes Attention functions

Yes Memory functions

Yes Psychomotor functions

SENSORY FUNCTIONS AND PAIN

Seeing and related functions

Yes Vision and related functions

Hearing and vestibular functions

Yes Hearing

VOICE AND SPEECH FUNCTIONS

Fluency and rhythm of speech functions

Yes Speech fluency

FUNCTIONS OF THE CARDIOVASCULAR AND RESPIRATORY SYSTEMS

Functions of the cardiovascular system

Yes Blood pressure

Yes Heart rate

Yes Heart rate at rest

Yes Electrical activity

Yes Other measures of the cardiovascular functions (Clinical symptoms)

Functions of the respiratory system

Yes Respiratory functions (Spirometry)

NEUROMUSCULOSKELETAL AND MOVEMENT-RELATED FUNCTIONS

Yes Reaction Time

HANDEDNESS / LATERALITY

Yes Handedness functions

ACTIVITIES AND PARTICIPATIONS

LEARNING AND APPLYING KNOWLEDGE

Yes Learning

Administration mode

Legend Yes No

Administration environment

Yes Hospital, clinic, university or recruitment center

No Participant residence

Yes Other (In deCODE's certified laboratory (for selected studies).)

Staff administering test

Yes Professionals (nurses, clinicians, etc)

Yes Interviewers/research assistants

No Other

Documentation on procedures

Administration language Icelandic

General Information

Name DNA Processing
Study name Decode (Icelandic Biobank)
Last update 08/06/2009

Contact

Unnur Thorsteinsdottir (Dr)
 Decode Genetics
Reykjavík 101
Phone: +354 570 1900
Email: unnur.thorsteinsdottir@decode.isMail
Utilization conditions No restrictions on the use of the protocols.

Samples

Legend Yes No
Sample name Blood Buccal cells Saliva Tumor Tissues - Tissues Cell lines Other - Genome-wide association DNA
  Main laboratory
  Sample labels/traceability (% of samples)
  • No RFID radio frequency identification
  • Yes Barcode
  • Yes Printed labels
  • No Handwritten numbers
  • No Others
  • No RFID radio frequency identification
  • Yes Barcode
  • Yes Printed labels
  • No Handwritten numbers
  • No Others
  • No RFID radio frequency identification
  • Yes Barcode
  • Yes Printed labels
  • No Handwritten numbers
  • No Others
  • No RFID radio frequency identification
  • Yes Barcode
  • Yes Printed labels
  • No Handwritten numbers
  • No Others
  • No RFID radio frequency identification
  • Yes Barcode
  • Yes Printed labels
  • No Handwritten numbers
  • No Others
  • No RFID radio frequency identification
  • Yes Barcode
  • Yes Printed labels
  • No Handwritten numbers
  • No Others
  • No RFID radio frequency identification
  • Yes Barcode
  • Yes Printed labels
  • No Handwritten numbers
  • No Others
Pre-extraction sample storage format Substrate storage condition
  • No Fresh (23°C)
  • Yes Refrigerated
  • Yes Frozen (-25°C)
  • Yes Dried (paper)
  • Yes Liquid Nitrogen
  • No Other
  • Yes Fresh (23°C)
  • No Refrigerated
  • No Frozen
  • Yes Dried (paper)
  • No Liquid Nitrogen
  • No Other
  • Yes Fresh
  • No Refrigerated
  • No Frozen
  • No Dried (paper)
  • No Liquid Nitrogen
  • No Other
  • No Fresh
  • No Refrigerated
  • No Frozen
  • No Dried (paper)
  • Yes Liquid Nitrogen
  • No Other
  • No Fresh
  • No Refrigerated
  • No Frozen
  • No Dried (paper)
  • Yes Liquid Nitrogen
  • No Other
  • No Fresh
  • No Refrigerated
  • No Frozen
  • No Dried (paper)
  • Yes Liquid Nitrogen
  • No Other
  • No Fresh
  • No Refrigerated
  • Yes Frozen
  • No Dried (paper)
  • No Liquid Nitrogen
  • No Other
Substrate storage period
  • Yes Short term (1-5 days)
  • Yes Long term (Years)
  • Yes Short term
  • Yes Long term (90 days)
  • Yes Short term
  • Yes Long term (2 years)
  • Yes Short term
  • Yes Long term (Years)
  • Yes Short term
  • Yes Long term (Years)
  • Yes Short term
  • Yes Long term (Years)
  • Yes Short term
  • Yes Long term (Years)
Protocols
DNA extraction DNA extraction method
  • Yes Salting out
  • No Phenol-chloroform
  • Yes Columnary-extraction
  • Yes Magnetic beads
  • No Oragene (saliva)
  • No Others
  • Yes Salting out
  • No Phenol-chloroform
  • No Columnary-extraction
  • Yes Magnetic beads
  • No Oragene (saliva)
  • No Others
  • Yes Salting out
  • No Phenol-chloroform
  • No Columnary-extraction
  • Yes Magnetic beads
  • Yes Oragene (saliva)
  • No Others
  • Yes Salting out
  • No Phenol-chloroform
  • No Columnary-extraction
  • Yes Magnetic beads
  • No Oragene (saliva)
  • No Others
  • Yes Salting out
  • No Phenol-chloroform
  • No Columnary-extraction
  • Yes Magnetic beads
  • No Oragene (saliva)
  • No Others
  • Yes Salting out
  • No Phenol-chloroform
  • Yes Columnary-extraction
  • Yes Magnetic beads
  • No Oragene (saliva)
  • No Others
  • No Salting out
  • No Phenol-chloroform
  • No Columnary-extraction
  • No Magnetic beads
  • No Oragene (saliva)
  • No Others
Automation of handling
  • Yes Manual
  • Yes Automated
  • Yes Manual
  • Yes Automated
  • Yes Manual
  • Yes Automated
  • Yes Manual
  • Yes Automated
  • Yes Manual
  • Yes Automated
  • Yes Manual
  • Yes Automated
  • Yes Manual
  • Yes Automated
Protocols Samples are homogenized prior to DNA isolation. Samples are homogenized prior to DNA isolation.
DNA handling and storage DNA diluent
  • Yes TE
  • Yes H2O
  • No Others
  • Yes TE
  • Yes H2O
  • No Others
  • Yes TE
  • Yes H2O
  • No Others
  • Yes TE
  • Yes H2O
  • No Others
  • Yes TE
  • Yes H2O
  • No Others
  • Yes TE
  • Yes H2O
  • No Others
  • Yes TE
  • Yes H2O
  • No Others
DNA concentration (ng/µl)
Storage conditions
  • Yes 4°C (Long term)
  • Yes -20°C
  • No -40°C
  • No -80°C
  • No Dried
  • No Others
  • Yes 4°C (Long term)
  • Yes -20°C
  • No -40°C
  • No -80°C
  • No Dried
  • No Others
  • Yes 4°C (Long term)
  • Yes -20°C
  • No -40°C
  • No -80°C
  • No Dried
  • No Others
  • Yes 4°C (Long term)
  • Yes -20°C
  • No -40°C
  • No -80°C
  • No Dried
  • No Others
  • Yes 4°C (Long term)
  • No -20°C
  • No -40°C
  • No -80°C
  • No Dried
  • No Others
  • Yes 4°C (Long term)
  • Yes -20°C
  • No -40°C
  • No -80°C
  • No Dried
  • No Others
  • No 4°C
  • Yes -20°C (Long term)
  • No -40°C
  • No -80°C
  • No Dried
  • No Others
DNA quantification Methods
  • Yes A260/A280
  • Yes Picogreen
  • Yes Nanodrop
  • No Others
  • Yes A260/A280
  • Yes Picogreen
  • Yes Nanodrop
  • No Others
  • Yes A260/A280
  • Yes Picogreen
  • Yes Nanodrop
  • No Others
  • Yes A260/A280
  • Yes Picogreen
  • Yes Nanodrop
  • No Others
  • Yes A260/A280
  • Yes Picogreen
  • Yes Nanodrop
  • No Others
  • Yes A260/A280
  • Yes Picogreen
  • Yes Nanodrop
  • No Others
  • Yes A260/A280
  • Yes Picogreen
  • Yes Nanodrop
  • No Others
Technical quality
  • Yes Automated
  • No Manual
  • Yes Reproducibility
  • Yes Automated
  • No Manual
  • Yes Reproducibility
  • Yes Automated
  • No Manual
  • Yes Reproducibility
  • Yes Automated
  • No Manual
  • Yes Reproducibility
  • Yes Automated
  • No Manual
  • Yes Reproducibility
  • Yes Automated
  • No Manual
  • Yes Reproducibility
  • Yes Automated
  • No Manual
  • Yes Reproducibility
Protocols
DNA quality control Percentage of samples that are tested 100.0 100.0 100.0 100.0 100.0 100.0 100.0
DNA quality method
  • No Agarose gel
  • No PCR
  • Yes A260/A280 ratio
  • No Others
  • No Agarose gel
  • No PCR
  • Yes A260/A280 ratio
  • No Others
  • No Agarose gel
  • No PCR
  • Yes A260/A280 ratio
  • No Others
  • No Agarose gel
  • No PCR
  • Yes A260/A280 ratio
  • No Others
  • No Agarose gel
  • No PCR
  • Yes A260/A280 ratio
  • No Others
  • No Agarose gel
  • No PCR
  • Yes A260/A280 ratio
  • No Others
  • No Agarose gel
  • No PCR
  • Yes A260/A280 ratio
  • Yes Others (Picogreen)
Protocols
DNA analysis Platforms
  • No Gentoyping
  • No Sequencing
  • No Methylation
  • No CNVs
  • No CGH
  • No FISH
  • No Other
  • No Gentoyping
  • No Sequencing
  • No Methylation
  • No CNVs
  • No CGH
  • No FISH
  • No Other
  • No Gentoyping
  • No Sequencing
  • No Methylation
  • No CNVs
  • No CGH
  • No FISH
  • No Other
  • No Gentoyping
  • No Sequencing
  • No Methylation
  • No CNVs
  • No CGH
  • No FISH
  • No Other
  • No Gentoyping
  • No Sequencing
  • No Methylation
  • No CNVs
  • No CGH
  • No FISH
  • No Other
  • No Gentoyping
  • No Sequencing
  • No Methylation
  • No CNVs
  • No CGH
  • No FISH
  • No Other
  • No Gentoyping
  • No Sequencing
  • No Methylation
  • No CNVs
  • No CGH
  • No FISH
  • No Other
Technical quality
  • No Automated
  • No Manual
  • No Reproducibility
  • No Automated
  • No Manual
  • No Reproducibility
  • No Automated
  • No Manual
  • No Reproducibility
  • No Automated
  • No Manual
  • No Reproducibility
  • No Automated
  • No Manual
  • No Reproducibility
  • No Automated
  • No Manual
  • No Reproducibility
  • No Automated
  • No Manual
  • No Reproducibility

General Information

Name Information Technologies
Study name Decode (Icelandic Biobank)
Last update 06/12/2009

Contact

Hakon Gudbjartsson
Decode Genetics
Reykjavik IS-101
Phone: + 354 570 1900
Email: hakon.gudbjartsson@decode.isMail

Software

Legend Yes No

Software overview

Biobanking areas covered NOAH deCODE LIMS Sequence Miner Questor Disease Miner
Participant recruitment (ex: CATI, CRM) Yes
Data collection Yes
Sample collection, storage and processing Yes
Data repository Yes Yes
Other Yes
 
Programming language NOAH deCODE LIMS Sequence Miner Questor Disease Miner
Name and version of programming language Java Java+Oracle Java, Oracle Java, Oracle XML+HTML+XSTL Java+Oracle/DB2
 
Internal/external development NOAH deCODE LIMS Sequence Miner Questor Disease Miner
In-house by IT department Yes Yes Yes Yes Yes
By an external company
 
Shareability NOAH deCODE LIMS Sequence Miner Questor Disease Miner
Freely available
Purchaseable Yes Yes Yes
Needs extensive work
Not for share Yes Yes

Software details

Biobanking areas covered

  • Yes Participant recruitment (ex: CATI, CRM)
  • No Data collection
  • No Questionnaires (ex: CAPI)
  • No Physical and cognitive measures
  • No Sample collection, storage and processing
  • No Collection
  • No Sample bio-repository management system (ex: sample storage management software)
  • No LIMS (ex: biochemical analysis, DNA extraction, genotyping)
  • No Data repository
  • No Data warehousing
  • No Study monitoring (ex: quality control)
  • No User data / sample request management

Name and version of programming language

Java

Internal/external development

  • Yes In-house by IT department
  • No By an external company

Shareability

  • No Freely available
  • No Purchaseable
  • No Needs extensive work
  • Yes Not for share

Biobanking areas covered

  • No Participant recruitment (ex: CATI, CRM)
  • No Data collection
  • No Questionnaires (ex: CAPI)
  • No Physical and cognitive measures
  • Yes Sample collection, storage and processing
  • Yes Collection
  • Yes Sample bio-repository management system (ex: sample storage management software)
  • Yes LIMS (ex: biochemical analysis, DNA extraction, genotyping)
  • Yes Data repository
  • No Data warehousing
  • Yes Study monitoring (ex: quality control)
  • Yes User data / sample request management

Name and version of programming language

Java+Oracle

Internal/external development

  • Yes In-house by IT department
  • No By an external company

Shareability

  • No Freely available
  • Yes Purchaseable
  • No Needs extensive work
  • No Not for share

Biobanking areas covered

  • No Participant recruitment (ex: CATI, CRM)
  • No Data collection
  • No Questionnaires (ex: CAPI)
  • No Physical and cognitive measures
  • No Sample collection, storage and processing
  • No Collection
  • No Sample bio-repository management system (ex: sample storage management software)
  • Yes LIMS (ex: biochemical analysis, DNA extraction, genotyping)
  • No Data repository
  • No Data warehousing
  • No Study monitoring (ex: quality control)
  • No User data / sample request management

Name and version of programming language

Java, Oracle

Internal/external development

  • Yes In-house by IT department
  • No By an external company

Shareability

  • No Freely available
  • No Purchaseable
  • No Needs extensive work
  • Yes Not for share

Biobanking areas covered

  • No Participant recruitment (ex: CATI, CRM)
  • Yes Data collection
  • Yes Questionnaires (ex: CAPI)
  • No Physical and cognitive measures
  • No Sample collection, storage and processing
  • No Collection
  • No Sample bio-repository management system (ex: sample storage management software)
  • No LIMS (ex: biochemical analysis, DNA extraction, genotyping)
  • No Data repository
  • No Data warehousing
  • No Study monitoring (ex: quality control)
  • No User data / sample request management

Name and version of programming language

Java, Oracle XML+HTML+XSTL

Internal/external development

  • Yes In-house by IT department
  • No By an external company

Shareability

  • No Freely available
  • Yes Purchaseable
  • No Needs extensive work
  • No Not for share

Biobanking areas covered

  • No Participant recruitment (ex: CATI, CRM)
  • No Data collection
  • No Questionnaires (ex: CAPI)
  • No Physical and cognitive measures
  • No Sample collection, storage and processing
  • No Collection
  • No Sample bio-repository management system (ex: sample storage management software)
  • No LIMS (ex: biochemical analysis, DNA extraction, genotyping)
  • Yes Data repository
  • Yes Data warehousing
  • No Study monitoring (ex: quality control)
  • Yes User data / sample request management
  • Yes Other (Statistical analysis, geneaology)

Name and version of programming language

Java+Oracle/DB2

Internal/external development

  • Yes In-house by IT department
  • No By an external company

Shareability

  • No Freely available
  • Yes Purchaseable
  • No Needs extensive work
  • No Not for share

Comments

No information available

© 2005 Public Population Project in Genomics.
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