title: Open Access Platforms in Spinal Cord Injury: Existing Clinical Trial Data to Predict and Improve Outcomes.
abstract: Recovery from acute spinal cord injury (SCI) is characterized by extensive heterogeneity, resulting in uncertain prognosis. Reliable prediction of recovery in the acute phase benefits patients and their families directly, as well as improves the likelihood of detecting efficacy in clinical trials. This issue of heterogeneity is not unique to SCI. In fields such as traumatic brain injury, Parkinson's disease, and amyotrophic lateral sclerosis, one approach to understand variability in recovery has been to make clinical trial data widely available to the greater research community. We contend that the SCI community should adopt a similar approach in providing open access clinical trial data.
authors.affiliation: 1 University of British Columbia, Vancouver, British Columbia, Canada.
authors.forename: John L K
authors.initials: JLK
authors.lastname: Kramer
authors.affiliation: 2 Rhausler, Inc, Can Carlos, CA, USA.
authors.forename: Fred
authors.initials: F
authors.lastname: Geisler
authors.affiliation: 3 Department of Biomedical Physiology and Kinesiology, Simon Fraser University, Burnaby, Canada.
authors.forename: Leanne
authors.initials: L
authors.lastname: Ramer
authors.affiliation: 1 University of British Columbia, Vancouver, British Columbia, Canada.
authors.forename: Ward
authors.initials: W
authors.lastname: Plunet
authors.affiliation: 1 University of British Columbia, Vancouver, British Columbia, Canada.
authors.forename: Jacquelyn J
authors.initials: JJ
authors.lastname: Cragg
mesh_terms: D022126:Access to Information; D002986:Clinical Trials as Topic / Q000379:methods*; D005260:Female; D006801:Humans; D008297:Male; D020127:Recovery of Function / Q000502:physiology*; D013119:Spinal Cord Injuries / Q000628:therapy*; D016896:Treatment Outcome
keywords: SCI; clinical trials; crowdsourcing; disease progression; heterogeneity; open access; recovery profile; spinal cord injury