| Name of Biobank |
LifeGene |
| Year Initiated |
2006 |
| Primary objective (one sentence) |
To serve as a resource for biomedical research, with transparent access, with longitudinal information from a national sample of 500,000 Swedes. |
| Key components (please briefly address the following): |
Prospective cohort – event-based sampling for influenza-like illness, injuries, pregnancy. Household-based recruitment. Longitudinal follow-up. Focus on exposures early in life and health outcomes that may be important for chronic diseases late in life. Parent-child study, including information from parents’ pre-conception of the child. |
| Time frame |
Piloting 2009, baseline assessments 2010-2015, longitudinal follow-ups: questionnaires annually, biosampling every 5th yr |
| Sample size (current and anticipated) and characteristics (age, gender) |
Current – 5,500 in pilot. Anticipated: 500,000 individuals plus 22,000 children born into the cohort during the course of baseline assessments. Index persons are men and women 18-45 years of age. Index persons can invite all adult members of their household (regardless of their age). In half of the households, children will also be invited to participate |
| Recruitment area, method of recruitment/follow-up, sample representativeness |
All of Sweden – randomly sampled (within age range) from population registries. Letters sent with personal log-in information. Web-based questionnaires and testing at test centers. Follow-up through E-mail contact, subsequent questionnaires, plus links to national registries. |
| Types of data/specimens collected (questionnaire, physical exam) |
Web-based questionnaires, physical exams including height, weight, bioimpedance, chest circumference, waist & hip circumference, blood pressure, spirometery, audionometry. Up to 59 ml blood (aliquoted for DNA, plasma – processed so that one can evaluate proteomics, mRNA, PBMCs, trace metals), urine. Front-end processing of Hb, HbA1c, hsCRP, cholesterol, TG, ApoA1, ApoB, ALAT, Creatinine, Cystatin C, Diff, LPK. For the children “born into the cohort”, collection of cord blood, placental tissue, and multiple biosampling in first 3 years of life. |
| Data collection, storage, processing systems |
All measurements and biobank samples from the various test centers are electronically entered into the LIMS system which is integrated with the LIMS system at the central biobanking facility, which is fully automated with robots. LifeGene’s central database also has features for incorporating the web-based questionnaire responses and all participant tracking, record linkage and data access features. |
| Method of consent, reporting of results |
“Soft consent” when signing up on the LifeGene web site, signed consent (on electronic pad) at test center. Both parents of children under age 15 must give consent for child. Adult participants are given back the results from Hb, HbA1c, hsCRP, cholesterol, TG, ApoA1, ApoB (if they want the feedback) after physician screening for extreme values. All participants are given feedback on the physical measurements at the test center. |
| Health outcomes of interest |
No specific disorder – full range of health outcomes. Considerable screening for psychiatric health and disorders, gastrointestinal, cardiovascular/metabolic, infections/viral diseases, urinary tract, women’s health, etc. |
| Funding Sources |
Start up funding and Biobanking facility – Swedish Research Council, primary support through two private sources: Torsten and Ragnar Söderberg Foundation and AFA Insurance, AB |
