The University of Alberta and the Christopher & Dana Reeve Foundation Partner to Facilitate Open Data Sharing

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Apr 28, 2023, 13:19 ET

New collaboration supports data retrieval and input into the Open Data Commons for Spinal Cord Injury, a first step toward field-enabling knowledge sharing and data transparency

SHORT HILLS, N.J., April 28, 2023 /PRNewswire/ -- Today, the Christopher & Dana Reeve Foundation and the University of Alberta announced a joint three-year initiative, supported by a $250,000 Reeve Foundation grant, to accelerate open data via the Open Data Commons for Spinal Cord Injury (ODC-SCI). The initiative aims to facilitate data standardization, knowledge sharing and scientific replicability and translation to spur more pre-competitive therapeutic research opportunities and reduce fundamental challenges within the research community that slow progress.

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"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," said Karim Fouad, Ph.D., Professor, Faculty of Rehabilitation Medicine - Physical Therapy at the University of Alberta and the co-director of the ODC-SCI. "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."

The ODC-SCI was established in 2017 by researchers at the University of Alberta and the University of California, San Francisco, with support from the Craig H. Neilsen Foundation, Wings for Life Spinal Cord Research Foundation and International Spinal Research Trust. It serves as a dedicated data sharing portal and repository for the field of SCI. Through the ODC-SCI, academics, scientists and industry peers can share data in a protected space and publish data directly to the public with a digital object identifier (DOI), making it easily searchable via the internet. The ODC-SCI also complies with the FAIR data principles: Findable, Accessible, Interoperable and Reusable for both humans and machines.

"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, Ph.D., 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."

Increasing transparency systematically – around lab gains and failures – helps remove long-entrenched barriers to discovery, eliminating time wasted duplicating unsuccessful hypotheses and allowing researchers to refine or redirect their focus as more data becomes publicly available. Most significantly, data sharing supports more expansive success throughout the field, accelerating drug discovery and device development as more pieces of the puzzle become visible to everyone.

The Reeve Foundation-University of Alberta partnership further supports evolving national and international policies that emphasize the importance of open data. In late January, the National Institutes of Health announced its requirements for data management and sharing plans for all research generating scientific data. In the coming years, the US government's open data requirements will expand to cover all scientific disciplines receiving federal research grants. Other funders in the European Union and Asia are also establishing country-specific data sharing obligations.

"Despite these swift-moving policy changes, data sharing is still a new and somewhat daunting concept for many SCI researchers. 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," adds Dr. Baptista.

Thus, this partnership seeks to address such barriers and maximize the investment of SCI foundations through the position of a Data Recovery Specialist who will serve as the primary liaison between laboratories and the ODC-SCI, helping manage and reformat data and perform data checks.

"We're eager to see the volume of open SCI data grow over the next three years. Our partnership with Dr. Fouad and the University of Alberta represents an important step for the Foundation toward field-enabling research investments, whereby impact extends beyond the scope of discrete studies so that the SCI community can benefit from faster and more effective science," said Dr. Baptista.

About the University of Alberta

The University of Alberta in Edmonton is one of the top teaching and research universities in Canada, with an international reputation for excellence across the humanities, sciences, creative arts, business, engineering and health sciences. The university and its people remain dedicated to the promise made in 1908 by founding President Henry Marshall Tory that knowledge shall be used for "uplifting the whole people."

About the Reeve Foundation

The Christopher & Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research and improving the quality of life for individuals and families impacted by paralysis. By uniting the brightest minds in the field, we are working tirelessly to accelerate scientific discovery across the field of spinal cord research by investing in labs across the globe. Additionally, through a cooperative agreement with the Administration for Community Living, the Reeve Foundation's National Paralysis Resource Center (NPRC) promotes the health, well-being, and independence of people living with paralysis, providing comprehensive information, resources, and referral services assisting over 120,000 individuals and families since its launch in 2002. The Reeve Foundation is committed to elevating our community's voices and needs to achieve greater representation and independence. We meet all 20 of the Better Business Bureau's standards for charity accountability and hold the BBB's Charity Seal. For more information, please visit www.ChristopherReeve.org or call 800-225-0292.

SOURCE Christopher & Dana Reeve Foundation