A healthier population in Sweden through better conditions for research on biobanks and health data

Reference number 2018-04256
Coordinator Uppsala universitet - Institutionen för immunologi, genetik och patologi
Funding from Vinnova SEK 1 500 000
Project duration November 2018 - August 2019
Status Ongoing
Venture Vision-driven health
Call Health Missions

Purpose and goal

The combination of large biobanks, health data in quality registers and genome sequencing generates unique opportunities for research that few other countries have. Today, however, it is unclear how information can be merged for different research purposes and how the consent of potential research participants can be obtained and handled in the best possible way. The goal is to enable biobanks and health data to be efficiently and safely combined and utilized - according to the patient´s consent - for academic and industrial research.

Expected results and effects

To create an effective, legal and sustainable way of identifying consenting individuals around Sweden whose disease data including health data, genetic profile and samples would enable clinical research based on molecular based hypotheses. This would provide better conditions for finding solutions to existing and future health challenges and medical issues, as well as being in the front edge of biomedical science.

Planned approach and implementation

The work will be conducted as a joint project between the Biobank Sweden Steering Group, the nationally collaboration for the Quality Registry Organizations, i.e. Regional Cancer Centres and the Register Centre, as well as the Genomic Medicine Sweden Steering Group. A joint project management team with key individuals from each organization will be appointed as well as project coordinators and project teams for the development of concrete goals and innovations. Collaboration exists with SKL, Inera and the function Registerforskning.se at the Swedish Research Council.

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