Partnership Enables Open Data Sharing for Spinal Cord Injury Research

Backed by a $250,000 grant, the University of Alberta and the Reeve Foundation have launched a joint three-year project to facilitate open data sharing through the Open Data Commons for Spinal Cord Injury (ODC-SCI).

The initiative seeks to create data standards to exchange clinical knowledge and reduce scientific duplicability, driving more collaborative research opportunities and addressing critical challenges that hinder progress within spinal cord injury research.

By offering research data transparency around lab gains and failures, researchers can avoid repetition. As a growing amount of data becomes publicly accessible, the concept of open data sharing enables researchers to refine their focus, consider alternative perspectives, and potentially uncover new insights, the organizations said.

"Our partnership with the Reeve Foundation is an exciting next step in the development of the ODC-SCI, which has the potential to improve treatment for up to half a million people living with spinal cord injuries worldwide and also influence research in other areas of health science, and rehabilitation,” Karim Fouad, PhD, professor and faculty of Rehabilitation Medicine Physical Therapy at the University of Alberta, said in a press release.

"We're enthusiastic about working with the Reeve Foundation and the entire SCI research community to grow the availability of open-source SCI data for the benefit of all those impacted by SCI and paralysis," said Fouad, who is also the co-director of the ODC-SCI.

The ODC-SCI, founded in 2017, serves as a dedicated data-sharing portal and repository for SCI research. Through the ODC-SCI, academics, scientists, and industry peers can gain access to data in a protected space and can publish data directly to the public with a digital object identifier (DOI).

"The Reeve Foundation is committed to increasing transparency throughout the field of SCI research. Success in advancing real-world therapies that improve quality of life requires shared resources and information," said Marco Baptista, PhD, chief scientific officer at the Reeve Foundation. "Our partnership underscores a critical sea change in the field, where scientists and others prioritize progress over individual and organizational interests."

The partnership between the Reeve Foundation and the University of Alberta reinforces the growing emphasis on open data in national and international policies. Recently, the National Institutes of Health released new requirements for data management and sharing plans for all studies generating scientific data.

"Despite these swift-moving policy changes, data sharing is still a new and somewhat daunting concept for many SCI researchers,” added  Baptista. “Lack of unified data sets, data entry expertise and time and budget constraints contribute to paucity, especially when a manuscript associated with data to be shared was published in the past."