Access to human big data to accelerate research and improve patient care

Registered researchers will have rapid access to an “unprecedented scale” of clinical research data through the new Common Infrastructure for National Cohorts in Europe, Canada and Africa (CINECA), launched today.

Simon Fraser University professor Fiona Brinkman, the initiative’s Canadian lead, says the project will not only accelerate disease research but will also help to advance benefits to patients worldwide through the responsible sharing of genetic, physical and lifestyle data.

In addition to accessing data quickly, scientists can now share research findings with other scientists and reduce the need to duplicate costly studies. Approved researchers will have access to a virtual cohort of data from 1.4 million individuals through CINECA’s distributed cloud-based network.

“The CINECA project will bring together studies from researchers worldwide, giving them the ability to derive new insights only possible through collective, large-scale data analysis,” says Brinkman, a professor in SFU’s Department of Molecular Biology and Biochemistry.

“Canadian research teams will tackle different key challenges to bring these studies together. Using distributed data analysis and a common language for the data, they’ll be able to bring together studies from across continents.”

Their research will support studies of the variability that exists in the human genome of patients to help improve the effectiveness of drugs. It is estimated that approximately 90 per cent of drugs are effective for less than 50 per cent of patients, prompting a need to better identify drugs and treatment based on genetic background.

Brinkman, along with SFU adjunct professor Will Hsiao, will implement a common language for datasets to facilitate data sharing and harmonization. Researchers Michael Brudno (Sick Kids Hospital and University of Toronto) and Guillaume Bourque (McGill University) will expand the national CanDIG platform for distributed, secure and private data sharing.

Says Brinkman, “These activities are key to generating new data observations that are impossible on a local scale.”

Researchers who register will receive credentials similar to a passport, verifying their identities and organizations before receiving data access. Brinkman says a strong ethics component is incorporated in the initiative to ensure secure, responsible and appropriate data access.

Primarily funded by the European Commission, the Canadian component is funded by a Canada-EU Commission Flagship Collaboration team grant from the Canadian Institutes of Health Research (CIHR).

The international project is led by the European Molecular Biology Laboratory’s European Bioinformatics Institute based at Cambridge University, UK. CINECA comprises 19 partner organizations, including two others from Canada—the Royal Institution for the Advancement of Learning at McGill University and The Hospital for Sick Children in Toronto.