Worldwide database for spinal cord research launches at U of A

A new, open-source database of spinal cord injury research through the University of Alberta could make it easier for researchers and healthcare professionals to access information.

Researchers with the university and the University of California, San Francisco launched the world's first Open Data Commons for pre-clinical Spinal Cord Injury research (ODC-SCI) on Thursday.

A consortium of international organizations is providing $3.3 million to help fund the project.

The directory will hold all spinal cord injury research data produced worldwide, not just results printed in publications. 

Experts said Thursday the data published in journals and other publications are used by scientists, healthcare professionals, and patients. 

• This exoskeleton shows people with spinal cord injuries what it's like to walk again
• Robotic exoskeleton allows paraplegics to walk again

But published data only represents a fraction of the available information.

"Every lab does things a little bit differently. To bring it all together in one database, it's a complicated process," said Karim Fouad, a professor in the U of A's faculty of rehabilitation medicine.

"If you want to go back as a P.I. [principal investigator] and look back at what your students did, this is actually quite difficult. To have an organized structure where all the data is the same from all students, that is going to be very helpful."

Often, studies with "negative" outcomes are not published, Fouad said.

That data, also known as "dark data," is often not stored anywhere that can be easily accessed, according to a U of A news release. 

Fouad estimates dark data represents about 80 to 85 per cent of all data collected worldwide on spinal cord injury research. 

Officials said there are a lot of benefits of the database not just to researchers, but also for patients. 

"Some of us are working on the same thing that's already been proven to be ineffective," said Ian Winship, a neuroscientist at the U of A.

"It only takes one transformative discovery to reshape recovery from spinal cord injuries, so the potential is huge." 

The first phase of the project will include outreach to the research community and data collection. 

The directory will be fully developed over five years, according to an U of A news release.