Cureus · 2018 · 12 citations · 18 references
MedicineNeurologyNeurosurgeryClinical Data ManagementClinical NeuroscienceData ManagementData CurationData Sharing PoliciesResearch Data ManagementClinical Data SharingData Access For ResearchersData AvailabilityData Availability Assessment
In this era of high health care cost and limited research resources, open access to de-identified clinical research study data may promote increased scientific transparency and rigor, allow for the combination and re-analysis of similar data sets, and decrease un-necessary replication of unpublished negative studies. Driven by expanded computing capabilities, advocacy for data sharing to maximize research value is growing in both translational and clinical research communities. The focus of this study is to report on the current status of publicly available research data from studies published in the top 40 neurology and neurosurgery clinical research journals by impact factor. The top journals were carefully reviewed for data sharing policies. Of the journals with data sharing policies, the 10 most current original research papers from December 2015 - February 2016 were reviewed for data sharing statements and data availability. A data sharing policy existed for 48% (19/40) of the 40 journals investigated. Of the 19 journals with an existing data sharing policy, 58% (11/19) of the policies stated that data should be made available to interested parties upon request and 21% (4/19) of these journals encouraged authors to provide a data sharing statement in the article of what data would be available upon request. Of the 190 articles reviewed for data availability, 21% (40/190) of these articles included some source data in the results, figures, or supplementary sections. This evaluation highlights opportunities for neurology and neurosurgery investigators and journals to improve access to study data and even publish the data prospectively for the betterment of clinical outcome analysis and patient care.
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