First global open-source database for spinal cord injury research will be a ‘game-changer,’ say experts
U of A research team receives $3.3 million to create data-sharing platform including results from both published and unpublished research.
By LAURIE WANG
Experts from the University of Alberta and two universities of California are teaming up to launch the world’s first open-source database for spinal cord injury research.
The Open Data Commons for preclinical Spinal Cord Injury research (ODC-SCI) will improve research and treatment worldwide by making data more accessible, according to researchers and patients.
“The database has the potential to improve treatment for up to half a million people suffering from spinal cord injuries worldwide, and also enhance research in other areas of health, science and rehabilitation,” said Randy Goebel, associate vice-president of research at the U of A.
U of A physical therapy professor and researcher Karim Fouad teamed up with Adam Ferguson at the University of California, San Francisco and Maryann Martone and Jeff Grethe at University of California, San Diego to launch the platform over the next five years.
The database will include all spinal cord injury research, not just published results.
Fouad explained data shared in publications and used by scientists, health-care professionals and even patients represent only a fraction of research data actually produced. Studies with so called “negative” outcomes are generally not published in a journal—”dark” data that is estimated to make up 85 per cent of all data collected, and representing millions in research dollars.
“For example, when a researcher finds that drug X doesn’t work, that data doesn’t get published, but the data can still be very helpful to further research,” explained Fouad, who holds the Canada Research Chair in Spinal Cord Injury.
“A researcher in another country would find it useful to know that drug X didn’t work—at least in the way it was delivered—so that they won’t repeat the study. Or they may see other effects of drug X that could help develop a new study for another therapy to treat spinal cord injuries.”
Improving research and treatment
The project is welcome news for Ana Lucas Osma who, at 18, suffered a spinal cord injury in Spain when she was one of seven passengers in a school van that rolled down a hill. The accident left her in a wheelchair. Now 40 and a research associate in the Faculty of Rehabilitation Medicine, she has dedicated her career to spinal cord injury research.
“The database is a game-changer not only in research, but also for people like me who have a spinal cord injury, said Osma. “Research often takes years. A worldwide open data commons will give researchers access to important data, and in the end, will improve studies and help us find better ways to treat spinal cord injuries. Because that’s what it’s about—improving quality of life for people in my community.”
The project received $3.3 million in funding from the Craig H. Neilsen Foundation, Wings for Life Spinal Cord Research Foundation and the International Spinal Research Trust.