LifeGene Project
- Ascertaining a cohort of at least 100,000 Swedes, including households;
- Repeated assessment of in depth exposure and outcome information through electronic means;
- Linkage with all available sources of medical record information (inpatient registry, cancer registry, and when possible, through primary care records);
- Collection of DNA and serum/plasma from all members of the cohort at initiation;
- Collection of other tissues (whole blood, serum/plasma, CSF, skin biopsies, etc.) as specific research questions dictate.
- Start Year
- 2009
Visit LifeGene
| Investigators | Contacts |
|---|---|
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Design
- Study design
- Cohort
- Follow Up
- Following baseline, participants and their family are prompted annually to respond a short, web-based questionnaire.
- Supplementary Information
Marker Paper
Almqvist C, Adami HO, Franks PW, Groop L, Ingelsson E, Kere J, Lissner L, Litton JE, Maeurer M, Michaëlsson K, Palmgren J, Pershagen G, Ploner A, Sullivan PF, Tybring G, Pedersen NL. LifeGene--a large prospective population-based study of global relevance. European Journal of Epidemiology. 2011; 26(1): 67-77.
PUBMED 21104112
Recruitment
- Recruitment Target
-
- Individuals
- Families
Number of Participants
- Number of Participants
- 100,000
- Number of Participants with Biological Samples
- 50,000
- Supplementary Information
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
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Timeline
Populations
Selection Criteria
- Minimum age
-
18
- Newborns
- Twins
- Countries
-
- Sweden
- Supplementary Information about selection criteria
- The minimum age is for index participants, who in turn may invite family/members of their household, including children 0-18 years. Adults of any age may participate, however initial focus was on ages 18-50.
Recruitment
- Sources of recruitment
-
- General population
- General Population
-
- Volunteer enrolment
- Selected sample
- Supplementary Information
-
Index participants were randomly sampled from the general population from the supplier of addresses; SPAR or Skatteverket. Other persons interested in participating have the possibility to spontaneously register from the LifeGene website.
Number of Participants
- Number of Participants
- 100,000
- Number of Participants with Biological Samples
- 50,000
- Supplementary Information about selection criteria
- The number of participants is continuing to be accrued.
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
LifeGene - Adults - Baseline
|
During the baseline investigation, information is collected from two primary sources: internet-based questionnaires and in person testing (IPT). The questionnaire provides information ... |
2009-09 | 2016-12 |
| 1 |
LifeGene - Adults - Follow-up 1
|
[Annually, participants answer a short web-based questionnaire for updates on changes in household composition, symptoms, injuries and pregnancy. This data collection is ongoing and follows the ... |
2010-11 | 2016-12 |
| 2 |
LifeGene - Adults - Follow-up 2
|
Annually, participants answer a short web-based questionnaire for updates on changes in household composition, symptoms, injuries and pregnancy. This data collection is ongoing. |
2011-11 | 2016-12 |
| 3 |
LifeGene - Adults - Follow-up 3
|
Annually, participants answer a short web-based questionnaire for updates on changes in household composition, symptoms, injuries and pregnancy. This data collection is ongoing. |
2013-11 | 2016-12 |
| 4 |
LifeGene - Adults - Follow-up 4
|
Annually, participants answer a short web-based questionnaire for updates on changes in household composition, symptoms, injuries and pregnancy. |
2014-11 | 2016-12 |
Selection Criteria
- Maximum age
-
18
- Newborns
- Twins
- Countries
-
- Sweden
Recruitment
- Sources of recruitment
-
- Specific population
- Specific Population
-
- Other specific population : Children of the adults recruited
- Supplementary Information
-
These are the children of the adult participants.
Number of Participants
- Number of Participants
- No Limit
- Number of Participants with Biological Samples
- No Limit
- Supplementary Information about selection criteria
- Collection is ongoing
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
LifeGene - Children - Baseline
|
During the baseline investigation, information is collected from two primary sources: internet-based questionnaires and in person testing (IPT). Only the custodians fill-out questionnaires ... |
2009-09 | 2016-12 |
| 1 |
LifeGene - Children - Follow-up 1
|
Annually, a short web-based questionnaire is provided for updates on changes symptoms and injuries. Only custodians fill-out questionnaires about children aged 14 and younger. Both custodian ... |
2011-11 | 2016-12 |
| 2 |
LifeGene - Children - Follow-up 2
|
Annually, a short web-based questionnaire is provided for updates on changes symptoms and injuries. Only custodians fill-out questionnaires about children aged 14 and younger. Both custodian ... |
2012-11 | 2016-12 |
Classifications
- Socio-demographic and economic characteristics
- Lifestyle and behaviours
- Birth, pregnancy and reproductive health history
- Perception of health, quality of life, development and functional limitations
- Diseases
- Symptoms and signs
- Medication and supplements
- Non-pharmacological interventions
- Health and community care services utilization
- Death
- Physical measures and assessments
- Laboratory measures
- Cognition, personality and psychological measures and assessments
- Life events, life plans, beliefs and values
- Preschool, school and work life
- Social environment and relationships
- Physical environment
- Administrative information
- Cognitive functioning
- Personality
- Psychological distress and emotions
- Other psychological measures and assessments
- Perception of health
- Quality of life
- Life course development
- Functional limitations
- Other perception of health, quality of life and functional limitation-related information
- Tobacco
- Alcohol
- Drugs
- Nutrition
- Breastfeeding
- Physical activity
- Sleep
- Sexual behaviours and orientation
- Technological devices
- Misbehaviour and criminality
- Other and unspecified lifestyle information
Socio-demographic and economic characteristics
Lifestyle and behaviours
Birth, pregnancy and reproductive health history
Perception of health, quality of life, development and functional limitations
Diseases
Symptoms and signs
Medication and supplements
Non-pharmacological interventions
Health and community care services utilization
Physical measures and assessments
Cognition, personality and psychological measures and assessments
Life events, life plans, beliefs and values
Preschool, school and work life
Social environment and relationships
Physical environment
Administrative information
Personality
Psychological distress and emotions
Quality of life
Life course development
Tobacco
Alcohol
Nutrition
Misbehaviour and criminality