In neuroscience and beyond, sharing data, especially ‘big, complex data’ has enormous potential to accelerate research and knowledge. However, if assumptions are made without a full understanding of the strengths and limitations of the data methods, then there is a risk for misinterpretation and confusion about the findings. Instead of accelerating knowledge, data sharing could actually have the opposite effect and ultimately be counterproductive.
Created with the leadership support of One Mind, the DAQCORD (DATA ACCESS QUALITY & CURATION FOR OBSERVATIONAL RESEARCH DESIGNS) Guidelines were developed by an international group of clinicians, scientists and data experts, who based on a review of the literature and their own experiences, reached consensus on items relevant to assessing the quality of clinical research data. These items have been incorporated into an online tool and provide a framework for study design as well as standardized self-assessment and reporting. Access to details regarding the data methods will enable potential collaborators and data users to judge for themselves as to whether the quality meets their needs and expectations. The Guidelines also have the potential to minimize the burden to researchers by laying out steps that can be taken during the course of the study to ensure data quality, rather than dealing with unexpected issues after the study ends.
The DAQCORD Guidelines Provide a Framework For:
Robust study design of clinical research, including those that use electronic health records, and data quality management
Standardized reporting on data methods and curation to enable the same conclusions to be reached by external stakeholders
Systematic appraisal of data methods for external reviewers (e.g. research funders) and investigators interested in using the data for new questions or reanalysis
Why One Mind's Support of DAQCORD Matters:
One Mind believes and supports the advancement of open science. To do this, One Mind incentivizes a collaborative research culture that promotes free sharing of ideas, methods, and data, to speed up brain health discoveries and their translation into diagnostics and cures. In knowing how influential the quality of the data is on the outcomes of the research and the speed at which scientific discoveries occur, One Mind helped guide the creation and operations of the DAQCORD collaboration. The DAQCORD reporting system will not only be beneficial to brain and mental health research, but also to all large-scale studies in any health-care domain.