Joint Programming Initiative

More Years, Better Lives

The Potential and Challenges of Demographic Change

Lifegene
Lifegene

Topic
Health and Performance
Relevance for this Topic
Country Sweden
URL
More Topics

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/
www.lifegene.se/For-scientists/About-LifeGene/

Timeliness, transparency

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

Type of data


Survey

Type of Study

Longitude survey: long-term study of random or different samples

Cohort study

Data gathering method

Self-administered questionnaire


biomedical tests


Access to data


To be agreed with principal investigator

Conditions of access


To be discussed with principal investigator. Priority is given to scholars in joint comparative studies.


To be discussed with principal investigator


Anonymised microdata, tables and biological samples


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


Data is available both in Swedish and in English.


Coverage


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


2012


The whole population


Linkage


ICD and ADL.


Data quality


Not relevant so far.


Not relevant so far.


Not relevant so far.


Applicability


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.


  • The information about this dataset was compiled by the author:
  • Kenneth Abrahamsson
  • (see Partners)