Lifegene

Summary

Strengths: 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 will conform to international recommendations. Key to the LifeGene effort will be modern bioinformatics and state of the art biobanking on all levels. LifeGene will be an open-access resource for many national and international researchers in the future. LifeGene is such a broad-based project that new scientific findings on a detailed level can be expected. The researchers will be able to work within a much broader and deeper scope than ever before. This will obviously lead to more reliable conclusions about relations between health and other variables such as genes, geography, occupation, medical history etc. "At present the governing bodies are defining the project, scientific methods, ethical issues and how to finance the project. This huge project will not interfere with traditional research funding as we are going to find other industrial and private financiers. Considering Sweden’s unique prerequisites – prominent researchers, public health registers, the general education level and IT experience – LifeGene will be a success and contribute to better health in Sweden and all over the world." Stated by Ingvar Carlsson, former Prime Minister of Sweden. Weaknesses: The scientific challenges also raise several scientific, methodological and ethical considerations and some of them are not yet solved. A public commission is now analyzing how one can combine scientific new challenges in bio-banks with ethical consideration in general, and to what extent one can collect data for future research without a specific using-focus.

Type of data

Data Source
Survey

Type of Study
Survey different
Cohort study

Data gathering method
Self administered questionnaire
Other: biomedical tests

Access to data

Conditions of access
To be agreed with principal investigator

Type of available data (e.g. anonymised microdata, aggregated tables, etc.)
Anonymised microdata, tables and biological samples

Formats available
Dataset compatible to all applications: ASCII, CSV, Excel, SAS, SPSS, STATA, Text, etc.

Coverage

Coverage Years of collection, reference years, and sample sizes
Data collection began in 2012, but has been postponed due to ethical issues. The LifeGene study is a national collaborative project designed to build up a resource for research in all medical disciplines, enabling new and groundbreaking research on the relationships among heredity, environment and lifestyle. The study, which is unique in the world, will include studying half a million Swedes with the aim of creating new tools to prevent, diagnose and treat our most common diseases. A pilot study is planned for 2009 and the roll-out of the project is planned for 2010. LifeGene will constitute a platform for a myriad of biomedical research projects. Researchers not only in biomedicine and biotechnology, but also behavioral and social sciences, may benefit from access to LifeGene. By combining a biological perspective with e-epidemiology, LifeGene will open up new possibilities for a greater understanding of the interplay between heredity, lifestyle and the environment as regards to our most common diseases. Features of LifeGene: Ascertaining a cohort of 500,.000 individuals in Sweden Regular assessment of in-depth exposure information through electronic means such as Internet and cell phones 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

First year of collection
2012

Stratification if applicable

Base used for sampling

Geographical coverage and breakdowns
The whole population

Age range

Statistical representativeness
Population representative

Coverage of main and cross-cutting topics

Linkage

Standardisation
ICD and ADL.

Possibility of linkage among databases

Data quality

Entry errors if applicable
Not relevant so far.

Breaks
Not relevant so far.

Consistency of terminology or coding used during collection
Not relevant so far.

Governance

Contact information
Nancy Pedersen, Director of LifeGene project and Professor in Genetic Epidemiology / Department of Medical Epidemiology and Biostatistics
Karolinska Institutet
PO Box 281
171 77 Stockholm Sweden Phone: +46-8-524 874 18
Email: nancy.pedersen(at)ki.se
Url: http://lifegene.ki.se/; https://www.lifegene.se/For-scientists/About-LifeGene/

Timeliness, transparency
Dataset in planning context due to legal aspects on collecting new data.