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The effective sharing of health research data within the healthcare ecosystem can have tremendous impact on the advancement of disease understanding, prevention, treatment, and monitoring. By combining and reusing health research data, increasingly rich insights can be made about patients and populations that feed back into the health system resulting in more effective best practices and better patient outcomes. To achieve the promise of a learning health system, data needs to meet the FAIR principles of findability, accessibility, interoperability, and reusability. Since the inception of the Brain-CODE platform and services in 2012, the Ontario Brain Institute (OBI) has pioneered data sharing activities aligned with FAIR principles in neuroscience. Here, we describe how Brain-CODE has operationalized data sharing according to the FAIR principles. Findable-Brain-CODE offers an interactive and itemized approach for requesters to generate data cuts of interest that align with their research questions. Accessible-Brain-CODE offers multiple data access mechanisms. These mechanisms-that distinguish between metadata access, data access within a secure computing environment on Brain-CODE and data access via export will be discussed. Interoperable-Standardization happens at the data capture level and the data release stage to allow integration with similar data elements. Reusable - Brain-CODE implements several quality assurances measures and controls to maximize data value for reusability. We will highlight the successes and challenges of a FAIR-focused neuroinformatics platform that facilitates the widespread collection and sharing of neuroscience research data for learning health systems.
RESUMO
OBJECTIVE: Concussion can cause deficits in balance and gait. Much of what is known about how concussion affects balance and gait has been derived from studies involving youth, high school, and university athletes. However, investigation into the effects of concussion on balance and gait in community-dwelling young, middle-age, and older aged adults is limited. This study aimed to present descriptive reference values for common balance and gait measures in community-dwelling adults between the ages of 20 and 69 years with concussion. METHODS: In this observational study, 318 participants were enrolled from a concussion care clinic at a rehabilitation hospital in an urban center and were assessed within 7 days of injury. Balance measures included the Balance Error Scoring System (BESS), modified BESS, and center-of-pressure root mean square during quiet standing. Gait measures included velocity (absolute and height adjusted), cadence, and step length during self-paced gait. Data were binned by decade-long age range. RESULTS: Mean (SD) per-decade scores for the BESS ranged from 14.8 (5.1) to 21.8 (5.6) errors and 4.0 (3.0) to 9.4 (4.6) errors for the modified BESS. Mean values for center-of-pressure root mean square in the anteroposterior direction ranged from 0.42 (0.18) to 0.52 (0.26) with the eyes open, and from 0.49 (0.19) to 0.62 (0.39) with eyes closed. Mean absolute gait velocity ranged from 98.5 (9.1) to 119.3 (21.3) cm/s. The range of step length values was 58.2 (6.8) to 66.3 (7.3) cm and cadence ranged from 102.1 (9.8) to 108.6 (10.8) steps/min across age groups. CONCLUSION: These data provide insight into the impact of concussion on balance and mobility in community-dwelling adults across the lifespan. IMPACT: Community-dwelling adults can experience concussion across the lifespan. Availability of reference values for commonly used balance and gait measures can help to inform clinical strategies and progression of recovery of balance and mobility after injury.
