A resource for the future
The unique resources in Sweden, such as our personal registration number, registries of genetically informative populations, and health outcomes, make Sweden an epidemiologic goldmine. As a complement to the register-based epidemiologic tradition, Sweden is in the forefront regarding development and implementation of information technology and biotechnology. Research over a long period of time will demand new methods and systems to handle the assembly and storage of data. The data-sharing policy conforms to international recommendations. Key to the LifeGene effort is modern bioinformatics and state of the art biobanking on all levels. LifeGene is an open-access resource for many national and international researchers in the future.
Features of LifeGene
- Ascertaining a cohort of about 300,000 individuals in Sweden.
- Regular assessment of in-depth exposure information through electronic means such as Internet.
- Regular surveillance of morbidity including assessment of symptoms and diagnoses for outcomes not typically reported in national health registers.
- Linkage with sources of medical record information.
- Opportunities to collect biological samples, including DNA, repeatedly and event-based.
- Open access to resource for researchers after scientific and ethical approval.
A prospective cohort study
“LifeGene is a unique prospective cohort study. The wide array of high-technology tools available through e-epidemiology will facilitate the longitudinal aspects of the study.” Professor Nancy Pedersen, director of the LifeGene project, says.
LifeGene aims to combine advances in modern biotechnology with information on individuals’ health and lifestyle. There will be a focus on disease etiology and everyday health problems. The open-access resource will provide new information about the causes of diseases that will lead to their prevention, refined diagnostic methods and therapeutic opportunities.
Focus on health and lifestyle
A few hundred thousand Swedes will be contacted for collection of information concerning their health, lifestyle and exposures as well as donation of samples. LifeGene will be longitudinal with repeated contacts of study participants. The number of questions that can be asked of the LifeGene resource will be innumerable and only limited by our ability to predict the future.
“LifeGene will focus not only on outcomes that typically have their onset late in life, but will focus on conditions that start very early, in some instances at infancy. What is interesting as an outcome for one field of study, e.g. infections, may be an important exposure for another,” Professor Pedersen says.
The LifeGene working groups have identified what exposures we can measure and how to measure these within different research areas. Exposures such as diet, physical activity, smoking, prenatal environment, infections, sleep-disorders, socioeconomic and psychosocial status, to name a few, will be assessed. LifeGene will represent an opportunity to evaluate the full omics-set including proteomics, metabolomics and epigenomics. E-epidemiology will be applied for rapid and repeated data collection. Questions and sampling schemes will be adjusted based on age and life-events.