Worldwide database for spinal cord research launches at U of A
'The potential is huge,' one neuroscientist says of open-data portal
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.
To encourage thoughtful and respectful conversations, first and last names will appear with each submission to CBC/Radio-Canada's online communities (except in children and youth-oriented communities). Pseudonyms will no longer be permitted.
By submitting a comment, you accept that CBC has the right to reproduce and publish that comment in whole or in part, in any manner CBC chooses. Please note that CBC does not endorse the opinions expressed in comments. Comments on this story are moderated according to our Submission Guidelines. Comments are welcome while open. We reserve the right to close comments at any time.
Become a CBC Account Holder
Join the conversation Create account
Already have an account?